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Copyright 2006 by F. A. Davis.

Copyright 2006 by F. A. Davis.

Nursing Care at the End of Life


Palliative Care for Patients and Families

Copyright 2006 by F. A. Davis.

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Copyright 2006 by F. A. Davis.

Nursing Care at the End of Life


Palliative Care for Patients and Families

Joyce V. Zerwekh, RN, EdD


Professor and Director, Nursing Program Concordia University Portland, Oregon

F. A. Davis Company Philadelphia

Copyright 2006 by F. A. Davis.

F. A. Davis Company 1915 Arch Street Philadelphia, PA 19103 www.fadavis.com Copyright 2006 by F. A. Davis Company All rights reserved. This product is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without written permission from the publisher. Printed in the United States of America Last digit indicates print number: 10 9 8 7 6 5 4 3 2 1 Acquisitions Editor: Joanne DaCunha Developmental Editor: Kristin L. Kern Art and Design Manager: Carolyn OBrien As new scientic information becomes available through basic and clinical research, recommended treatments and drug therapies undergo changes. The author(s) and publisher have done everything possible to make this book accurate, up to date, and in accord with accepted standards at the time of publication. The author(s), editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of the book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation. The reader is advised always to check product information (package inserts) for changes and new information regarding dose and contraindications before administering any drug. Caution is especially urged when using new or infrequently ordered drugs. Library of Congress Cataloging-in-Publication Data Zerwekh, Joyce V. (Joyce Valborg) Nursing care at the end of life : palliative care for patients and families / Joyce V. Zerwekh. p. ; cm. Includes bibliographical references and index. ISBN-13: 978-0-8036-1128-3 (pbk.) ISBN-10: 0-8036-1128-5 (pbk.) 1. Palliative treatment. 2. Nursing. 3. Terminal carePsychological aspects. 4. Terminally illFamily relationships. I. Title. [DNLM: 1. Hospice Care. 2. Nursing Care. 3. Palliative Care. 4. Terminally Ill. WY 152 Z58n 2006] RT87. T45Z47 2006 616'.029dc22 2005027123

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Copyright 2006 by F. A. Davis.

C O N T R I B U T O R S

Dionnetta Hudzinski, RN, MN Nursing Consultant: Pain and Palliative Care Instructor, Intercollegiate College of Nursing Yakima Campus Washington State University Yakima, Washington Inge Klimkiewich, RN, MSN, CHPN Fort Pierce Clinical Director Hospice of the Treasure Coast Fort Pierce, Florida Elaine McIntosh, MBA President and Chief Executive Ofcer Kansas City Hospice Kansas City, Missouri Leslie H. Nicoll, RN, MBA, PhD Editor, Journal of Hospice and Palliative Nursing Hospice and Palliative Nurses Association Pittsburgh, Pennsylvania Theris Touhy, RN, ND Assistant Dean for Undergraduate Program College of Nursing Florida Atlantic University Boca Raton, Florida

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R E V I E W E R S

Nancy Ann Cook, RN, MN Professor of Nursing Oklahoma City Community College Oklahoma City, Oklahoma Joan E. Dacher, PhD, RN, GNP Graduate Program Director The Sage Graduate School Department of Nursing and Gerontology Troy, New York Linda M. Gorman, APRN, BC, MN, CHPN, OCN Palliative Care Clinical Nurse Specialist Cedars Sinai Medical Center Los Angeles, California Linda J. Keilman, MSN, APRN, BC Assistant Professor Gerontological Nurse Practitioner Michigan State University College of Nursing East Lansing, Michigan Carole A. Kenner, DNS, RNC, FAAN Dean and Professor University of Oklahoma College of Nursing Oklahoma City, Oklahoma Jane Marie Kirschling, RN, DNS Dean and Professor University of Southern Maine College of Nursing and Health Professions Portland, Maine Carol Meadows, MNSC, FNP, APN Instructor University of Arkansas Eleanor Mann School of Nursing Fayetteville, Arkansas vii

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Reviewers

Jeanne Martinez, RN, MPH, CHPN Associate Director Northwestern University Chicago, Illinois Brother Ignatius Perkins, OP, RN, DNSC Executive Vice President The National Catholic Bioethics Center Washington, DC Rosalee J. Seymour, RN, MSN, EdD Associate Professor East Tennessee State University Johnson City, Tennessee Beryl Stetson, RN, MSN Instructor Raritan Valley Community College Somerville, New Jersey Iris Barrow Warren, RN, MSN Associate Professor University of Alabama in Huntsville Huntsville, Alabama

Copyright 2006 by F. A. Davis.

P R E F A C E

This book has taken shape over my 26 years in hospice nursing practice, leadership, education, and writing. I began teaching nursing in 1969. In 1997 I began practicing in home health and was privileged in 1979 to join three nurse colleagues, a social worker, and a chaplain, comprising the rst paid team at Hospice of Seattle. We were one of the rst hospice programs in the country and provided home care before the government or insurance companies became involved; that was when the only guidelines for practice were written in England. After that intense experience in developing bedside practice knowledge, writing about what we had learned, and speaking about it, I moved to inpatient hospice care to join a collaborative effort to plan and eventually open Seattles rst inpatient hospice, Hospice Northwest. These early hospice experiences led me to co-author the 1984 Hospice and Palliative Nursing Care with Ann Blues (now Ann Widmer). In 1986, I joined the faculty at the University of Washington to teach in the last months of the Transition Services program, the end-of-life nursing graduate program that had been initiated by pioneering end-of-life nurse scholars Jeanne Benoliel and Ruth McCorkle. I have followed many paths since then, including completing my doctorate, teaching at several universities, and publishing a 1995 qualitative study of hospice nursing practice that proposed the hospice practice model, The Hospice Family Caregiving Model, described in Chapter 1. This text integrates my many years of teaching nursing with my hospice expertise and deep appreciation for the clinical wisdom of nurses practicing at the bedside. I believe that nurses can make a profound difference in the quality of life at its end. Nursing Care at the End of Life: Palliative Care for Patients and Families systematically explores the knowledge base foundational for effective clinical practice. With that in mind, I have chosen to organize the text into six distinct but integrated units: UNIT ONE, End-of-Life Care, examines the ground where the Endof-Life Caregiving Tree is planted. In other words, it looks at the context of caregiving in the United States, the environment in which end-of-life care can either grow or falter. UNIT TWO, Sustaining Yourself as a Nurse, explains that the tree must be deeply rooted in a foundation of self-care, in order to sustain caregiving. UNIT THREE, Reaching Out and Connecting, comprises the trunk of the tree, which connects the roots (self-care) to the branches that extend out to care for others. Unit Three explores core understanding ix

Copyright 2006 by F. A. Davis.

Preface

of the human experience of patients and develops the skills necessary to build relationships and provide emotional comfort. UNIT FOUR, Ethical and Spiritual Practices, examines these dimensions as a main branch of the Caregiving Tree, arising out of the connecting trunk. UNIT FIVE, Strengthening the Family, is likewise conceptualized as a main branch of the Caregiving Tree, arising out of the connecting trunk. UNIT SIX, Comforting, is symbolized by the leaves on the tree, which represent the extraordinary variety of interventions that provide physical comforting. Each chapter begins with a Philosophical Reection and Learning Objectives to focus learning. The chapters end with Concepts in Action, which is a clinical narrative and questions requiring thoughtful application of concepts discussed throughout the chapter. Throughout the text, the reader will nd illustrative quotations from expert nurses who were interviewed by the author. Some can be found in my previous publications (Zerwekh, 1993, 1994, & 1995), but many are quotations from the original interviews that have never before been published. Planting the Seeds boxes offer practice-centered advice, and takeaway tips for nurses to use and integrate into their own work. Internet Reference Boxes call the readers attention to strong information sources available on the Web.

UNIT ONE: End-of-Life Care: Chapters 1 and 2


This unit examines the ground where the Caregiving Tree is planted. Chapter 1 describes the context in which nurses practice at the end of life by identifying common characteristics of dying in America. Then it explores ten competencies of hospice nursing originally identied by the author. Chapter 2, Hospice and Palliative Care, describes the end-of-life caregiving movements that continue to inuence the quality of end-of-life care signicantly. Modern-day hospices are programs to care for the dying that combine compassionate care with the nest pain and symptom management. The ideals of the hospice movement emphasize care of body, mind, and spirit, with judicious use of medical technology. Hospice emphasizes speaking the truth about dying and encourages patients to choose how they will spend their last days. Hospice care focuses on the needs of the entire family and fosters living fully until death. Palliative care also focuses on comforting at the end of life. Palliation involves reducing discomfort without curing. The contemporary palliative-care movement expands beyond the way hospice has been organized in the United States to incorporate palliative measures while still offering aggressive life-sustaining measures.

UNIT TWO: Sustaining Yourself as a Nurse: Chapters 3 and 4


Self-care and working with others comprise the roots of the End-of-Life Caregiving Model. The roots of the tree receive nourishment from the soil so that

Copyright 2006 by F. A. Davis.

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they can provide sustenance to the rest of the tree. Similarly, nurses receive nourishment from self-care and collaboration with other health-care practitioners so that they can nurture and care for patients and their families. Chapter 3, Strategies to Stay Healthy, asserts that the effectiveness of work with the dying is determined by the nurses self-awareness and effort to maintain personal well-being. The ability to care for dying individuals is sustained by tending to oneself. We bear up against difculties because of our strong roots. We must deliberately nourish our body and spirit through healthy nutrition and exercise, as well as other strategies, such as developing a supportive community and nding meaning in transcendent spiritual reality. Only through deliberate self-care are we able to be strong enough, grounded enough, to confront the fear and suffering of patients and families. Chapter 4, Collaborating with an Interdisciplinary Team, describes working relationships with many other caregivers. Nurses do not work alone. Consider the trees of the forest. On the surface, they appear to stand alone. Under the ground, their roots are intertwined. So it is that our roots are intertwined with those of other team members. The tree is rooted in and upheld by these collaborative relationships. The composition of each team is different. Hospice teams commonly include nurses, social workers, physicians, spiritual counselors, pharmacists, nursing assistants, therapists, and volunteers. Interdisciplinary teams work together to develop shared goals that consider the family and the patient as a whole entity. This requires mutual respect and careful listening to perspectives different from ones own.

UNIT THREE: Reaching Out and Connecting: Chapters 5, 6, 7, and 8


Firmly rooted in the ground, the crown is the neck of the root where it emerges above the ground and becomes the trunk of the tree. Nursing at the end of life involves reaching out to face fear and be in the presence of dying. The trunk of the tree connects the roots to the branches and is the ascending structure from which branches and leaves eventually develop. In the End-ofLife Caregiving Model, the trunk represents Reaching Out and Connecting. Connecting is dened as the process of joining in a relationship with the patient and loved ones. This unit explores the human experience of the dying person and the process of developing an authentic relationship with people who are dying. It also includes an examination of grief and cross-cultural differences because these components affect the human experience and the ability to make connections. Chapter 5, Understanding the Dying Experience, considers how dying changes living. Connecting with the dying requires a fundamental understanding of the human experience at the end of life. This chapter explores the different types of death awareness. The experience of dying involves profound suffering that is unrelated to physical discomfort as the person faces disintegration of identity and threat to the continued existence of the self.

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Nevertheless, many assert that dying can be considered to be a nal stage of human development in which both families and patients can nd meaningful growth and reconciliation. Chapter 6, Connecting and Caring Presence, establishes a commitment to caring and compassion and provides concrete recommendations for establishing relationships with people nearing the end of their lives. Connecting involves active deep listening (often to difcult experiences of the dying), speaking the truth, and encouraging patient and family choice. Connecting requires the deliberate practice of caring presence, in which we deliberately focus attention on the other person, letting go of distractions, and being conscious of the other person as a human being. Chapter 7, Grief and Mourning, explains current understanding of unhealthy and healthy grief. Elisabeth Kubler-Ross described ve psychological reactions common to the grief process: denial, anger, depression, bargaining, and acceptance. Initially, these were understood as stages through which a person should proceed in a stepwise process in one direction toward healing. Now these reactions are understood as predictable dimensions of grief through which people move back and forth in a far more unpredictable way. Likewise, our understanding of how to help the grieving person has changed. Freud and other therapists once asserted that a grieving person must directly confront feelings through grief work in order to heal. Contemporary research demonstrates, however, that sharing feelings with others does not necessarily reduce the distress or foster readjustment of those grieving loss of a love. This means that nurses should offer active listening to the bereaved and those anticipating bereavement without forcing expression in any way. Grieving individuals should choose the extent to which they want to disclose feelings. Chapter 8, Cross-Cultural Competency at the End of Life, asserts that we must go beyond the Golden Rule, which mandates that we should care for others as we ourselves would want. Instead, we should care for others as they would want. This requires opening our mind to ways of thinking and behaving that may be difcult to comprehend from our own perspective. Sometimes, cross-cultural competency requires bridging cultural gaps that challenge essential beliefs of the hospice and palliative-care movement. For instance, we believe that there comes a time when aggressive care is futile and causes purposeless suffering. At that point, it is time to focus entirely on comfort. However, African Americans and other minorities who have lived with discrimination in their lives sometimes believe that withdrawal of aggressive interventions is tantamount to neglect and abandonment.

UNIT FOUR: Ethical and Spiritual Practices: Chapters 9 and 10


Ethical and Spiritual Practices branches out from the connecting trunk in the End-of-Life Caregiving Model. One component of every relationship is attention to ethical and spiritual caring. Impending death causes us to confront ultimate moral and spiritual issues.

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Chapter 9, Ethical Issues at the End of Life, presents major ethical issues that challenge us as nurses who provide care at the end of life. There may be conicts around doing good and not doing harm. Individual decision-making is encouraged by the hospice movement, but when individuals lose their capacity for decisions, families can fall into extraordinary conict over what is good and not harmful for their loved one. Chapter 10, Spiritual Caring, differentiates between spirituality and religious faith and explains how spiritual understanding is essential to a holistic understanding of the person at the end of life. Spiritual needs at the end of life include hope, meaning, reconciliation, and transcendence. Nursing interventions can foster hope, meaning, and reconciliation in the dying patient, regardless of specic religious belief. The practice of being a healing or caring presence is a vital spiritual intervention that involves authentic listening, staying at the bedside, watching, and simply being there.

UNIT FIVE: Strengthening the Family: Chapters 11 and 12


Strengthening the Family branches outward from the connecting trunk. Caring relationships are integral to strengthening the family. Patients cannot be considered in isolation. They are members of families and have circles of friends. Their dying profoundly affects family functioning, and often the family provides extensive caregiving at the end of life. Families need special help when children are involved, either as survivors or as patients. Chapter 11, Understanding and Strengthening Families, describes working with American families when a family member is dying to provide emotional support and to strengthen their caregiving ability. The family goes through a major transition that involves redening the entire family life and struggling with the paradox that the patient is both living and dying. The burden of caregiving is highly stressful as caregivers learn to manage the illness and respond to the suffering of their loved one. Nurses guide families by assisting with the transition and redenition of family life, and developing the families capacity to provide physical and emotional care. Chapter 12, Children Facing Death, describes normal behavior of grieving children at each developmental stage and presents caring strategies for each age group. The chapter also describes essential features of palliative physical and emotional care when the child is the one who is dying. Children often suffer needlessly because of the contemporary compulsion to save life at all costs. Both clinicians and parents have difculty accepting it when life prolongation no longer makes sense. Likewise, both clinicians and parents may fail to acknowledge the childs suffering; childrens pain is notoriously undertreated.

UNIT SIX: Comforting: Chapters 13, 14, 15, 16, and 17


Five chapters comprise this unit on comforting. Providing physical comfort is illustrated as foliage on the End-of-Life Caregiving Tree. The extensive

Copyright 2006 by F. A. Davis.

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number of leaves illustrates the multiplicity of ways to relieve a persons discomfort. Chapter 13, Understanding and Anticipating the Course of Terminal Disease, examines the process of end-of-life prognostication and explains the pathophysiology and predictable set of symptoms for the top causes of death. Predicting the course of end-stage disease enables the nurse to anticipate patient needs, provide anticipatory guidance for patient and family, and prevent crisis instead of waiting for crisis to occur. One important nursing role is to encourage patients to ask questions and speak truthfully about concerns. Permission to speak openly about difcult subjects, like pain and fear, is a hallmark of effective nursing at the end of life. Chapter 14, Comforting and the Essentials of Pain Relief at the End of Life, presents foundational concepts for pain control. The subjectivity of the pain experience leads many clinicians to doubt patients when they report pain. This leads to a signicant problem with undertreatment. Nurses must not accept pain as a normal experience that patients must endure as a consequence of their illness or surgery. Unfortunately, we risk being in the presence of pain without seeing, hearing, or comforting. Unrelieved pain is known to shorten life, cause hopelessness, and consume the energy of the dying so that they are unable to have any quality of life in their nal days. Chapter 15, Medicating for Pain at the End of Life, provides a foundation for understanding analgesic drugs. Selected essential concepts include around-the-clock scheduling of drugs to maintain a stable blood level; use of long-acting preparations to sustain the blood level; oral administration as the rst choice of route; careful adjustment and readjustment of drug, dose, and interval; and use of opioids, nonopioids, and adjuvant medication. Fear of opioids remains a major barrier to comforting the dying. When carefully titrated to terminal pain, opioids cause neither addiction nor death from respiratory depression. Chapter 16, Management of Physical Nonpain Symptoms, provides detailed guidance to understand medical and nursing interventions to relieve common end-of-life symptoms. As with pain, the foundation of symptom assessment is carefully questioning patients about their symptoms. End-of-life nurses should continually refocus family and professional caregivers on maintaining comfort for the dying person. The nurse needs to assume a courageous role as patient advocate when physical suffering is ignored. Chapter 17, Caring in Different Settings When Death Is Imminent, presents the signs and symptoms that are indicators of imminent death and explains their management. At the very end of life, nurses support patients letting go and provide spiritual caring. This chapter describes the challenges of creating a caring environment for life to end in the intensive care unit, nursing home, and home. Death at home requires a trained family that is clear about whether it will call paramedics when breathing and heartbeat slow and stop. Medications must be on hand to manage the common, predictable symptoms that may arise.

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I hope you will nd Nursing Care at the End of Life: Palliative Care for the Patient and Family to be informative and provocative. The intent is to delve below the surface of the most common end-of-life issues. Consider how you may apply the ideas to practice wherever you nurse. As you read, ask yourself the following questions: What is the quality of nursing at the end of life in your current practice or in clinical practicum settings where you are a student? What would you like to change in your individual actions? How could you provide greater physical, emotional, and spiritual comfort for your dying patients and their families? What do you need to know and do? Who can help you? What kinds of organizational changes are necessary for system-wide change to improve nursing at the end of life where you work or where you are a student? What are the barriers, and who can come together to facilitate change? Remember the famous quotation by Margaret Mead, Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. That is the way the hospice movement began and so it will be with every program and policy that humanizes end-of-life care.

References
Zerwekh, J. (1993). Transcending life: The practice wisdom of hospice nursing experts. The American Journal of Hospice and Palliative Care, 10(5), 2631. Zerwekh, J. (1994). The truth-tellers: What you can learn from hospice nurse experts. American Journal of Nursing, 97(3), 3034. Zerwekh, J. (1995). A hospice family caregiving model for hospice nursing. The Hospice Journal, 10(1), 2744.

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C O N T E N T S

U N I T

O N E

END-OF-LIFE CARE

Chapter 1 Chapter 2

The End of Life and End-of-Life Caregiving 3 Hospice and Palliative Care
21

U N I T

T W O

SUSTAINING YOURSELF AS A NURSE

Chapter 3 Chapter 4

Strategies to Stay Healthy

43

Collaborating with an Interdisciplinary Team 63

U N I T

T H R E E

REACHING OUT AND CONNECTING

Chapter 5 Chapter 6 Chapter 7 Chapter 8

Understanding the Dying Experience 85 Connecting and Caring Presence Grief and Mourning
131 113

Cross-Cultural Competency at the End of Life 155

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Contents

U N I T

F O U R

ETHICAL AND SPIRITUAL PRACTICES

Chapter 9 Chapter 10

Ethical Issues at the End of Life Spiritual Caring


213

179

U N I T

F I V E

STRENGTHENING THE FAMILY

Chapter 11 Chapter 12

Understanding and Strengthening Families 243 Children Facing Death


265

U N I T

S I X

COMFORTING

Chapter 13 Chapter 14 Chapter 15 Chapter 16 Chapter 17 Index... 443

Understanding and Anticipating the Course of Terminal Disease 291 Comforting and the Essentials of Pain Relief at the End of Life 315 Medicating for Pain at the End of Life Management of Physical Nonpain Symptoms 387 Caring in Different Settings When Death Is Imminent 419
347

Copyright 2006 by F. A. Davis.

U N IT

O N E

END-OF-LIFE CARE

Copyright 2006 by F. A. Davis.

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C H A P T E R

The End of Life and End-of-Life Caregiving


Philosophical Reections Ivan Ilyich suffered most of all from the lie, the lie, which, for some reason, everyone accepted: that he was not dying but was simply ill, and that if he stayed calm and underwent treatment he could expect good results.
LEO TOLSTOY, THE DEATH OF IVAN ILYICH

Learning Objectives 1. Explain how the contemporary circumstances of death in America can result in a dehumanizing experience. 2. Describe how the original Hospice Family Caregiving Model was developed. 3. Describe the 10 original hospice caregiving competencies and give examples of how to implement them in nursing practice.

Copyright 2006 by F. A. Davis.

Unit One

End-of-Life Care

Nursing practice at the end of life intimately inuences the quality of life in patients nal days. When a dying patient requires care, many factors present in American health-care settings come into playfrom nances to technology. Nurses can make the difference between a dehumanizing experience for a dying patient and his family, and enable last days that are peaceful and person-centered. And when all is said and done, it is the nurse who is present for the patient and family to ensure comfort and guide them toward closure. This chapter introduces readers to both the realities of dying in America and the ideals of dying in America. It explains the Hospice Family Caregiving Model, which was developed 20 years after the American hospice movement started improving the circumstances of American death. This initial model for hospice nursing was the predecessor to the End-of-Life Caregiving Model used to organize this entire text. Both models visualize end-of-life nursing as a tree. Importantly, this chapter sets the scene for the nursing interventions and ideas that follow in the remainder of the text.

END OF LIFE IN CONTEMPORARY AMERICA


To highlight the unmet needs of dying people, it is important to grasp the context of death and dying in America today. After all, it is within this context that nurses must advocate, comfort, and care for dying patients and their families. This is the ground in which the End-of-Life Caregiving Tree is rooted. Death in contemporary America is characterized by institutionalization, uncertainty, the battle against disease, social isolation, and professional detachment.

Institutionalization
Before the mid 20th century, throughout the developed world, death occurred at home. But since then and currently, most people die in institutions and in the care of strangers. Approximately 75% of deaths occur in hospitals or nursing homes (Hooyman & Kiyak, 2005). There is signicant variation between the states, however. Utah and Oregon have the highest number of deaths in the home (Oregon Hospice Organization, 2005). For instance, the 2004 statistics for Oregon reveal that 30% of deaths were in hospitals, 29% in long-term care centers, 34% at home, and 7% in other locations (ONeill, 2005). Contemporary American hospitals provide acute care only for people with rapidly changing conditions. The hospital focus is on avoiding death at all cost. Dying in the hospital is permitted only if it happens incidental to managing acute pathophysiology. Reecting this way of thinking, under Medicare, there is no Diagnosis Related Group (DRG) for imminent death or palliative care. Despite the statistics, most people say they would prefer to die at home (Oregon Hospice Association, 2005); but there are a number of limiting factors: Absence of family or friends who can provide care Lack of social and economic support for available caregivers Preoccupation with medical treatments to sustain life

Copyright 2006 by F. A. Davis.

Chapter 1

The End of Life and End-of-Life Caregiving

Absence of medical and nursing resources and expertise to provide end-of-life care in the home As dependency needs increase, many dying people simply have no one available in the home who is able to provide their physical care. Many children, spouses, siblings, and friends are unable to give up their jobs to become full-time caregivers. In the case of the very old, potential caregivers may be too frail themselves to become caregivers. Even if potential caregivers exist, their capacity is limited if there is no extended network among friends, family, and the community to support them. Since most life-threatening diseases today are considered to be chronic and treatable, many people end up cared for in hospitals and nursing homes, which are considered to be the only environments capable of providing complex treatments. Whereas in the past, many conditions were considered to be rapidly terminal, today disease courses are longer and prognoses more uncertain, leading to extended stays in institutions.

Uncertainty
Uncertainty and denial pervade end-of-life care. Most Americans do linger and experience a prolonged end of life, living with an uncertain future. Twothirds of dying people have been chronically ill; diseases are detected early and medical regimens keep them alive for months and years (Moller, 2000). Therefore, prognoses are uncertain. The time to say good-bye is never clear. Physicians, patients, and families have difculty speaking openly about death. They seek to deny its possibility and focus on potential for life. Uncertainty makes it difcult, if not impossible, for individuals to avail themselves of the hospice benet, which requires that a physician certify that a patient has 6 months or less to live. Even when the patient is weeks or days from death, contemporary medicine always offers one more intervention. It is hard for fearful patients and families to say, Enough!

Fighting Disease
In the beginning of the 21st century, the battle against evil death seems to be the primary focus of health care. Physicians are preoccupied with solving the riddle of disease (Nuland, 1994) and conquering death. The more specialized the physician, the greater his or her primary drive and unspoken professional code requiring intervention after intervention to battle disease. Dr. Ira Byock (1997), trained in the battle against death, describes the jolt he experienced with his own fathers dying. He asserts that the emphasis at the end of life needs to be on the human being and those who love that person, not on a set of medical problems needing to be solved. As a physician, he had been socialized to ght death down to the nish line. Everything possible had to be done to save the patient at all costs: Every patient with a pneumonia or fever from bacteria in their blood received intravenous antibiotics. Those who died only did

Copyright 2006 by F. A. Davis.

Unit One

End-of-Life Care

so after an emergency code was called over the loudspeaker and a team was summoned to perform CPR, invading the body with tubes, compressing the chest hard enough to pump blood manually (and sometimes crack ribs), and applying electrical jolts to try shocking the heart back into a rhythm. I wondered what it was permissible to die from (p. 27). Contemporary medicine has been accused of suffering under the delusion that we can actually win the battle against disease and death (Callahan, 1999). The costs of such hopes can be seen in the escalating prices of drugs and technological interventions that are stressing the economies of nations around the world. To be sure, many of these drugs and technological advances help to save lives and preserve quality of life for individuals. But on the other side, turning fatal conditions into expensive chronic illnesses strains societal ability to afford care and creates a growing population of sick people. Technological interventions are perceived as the instruments for winning the battle against death. Americans believe that technology can restore our polluted planet, conquer our enemies, and conquer death. Human problems are transformed into technical problems with technical solutions (Moller, 2000).

Turning fatal conditions into expensive chronic illnesses strains societal ability to afford care and creates a growing population of sick people.

As a result, maintaining the function of physiological systems becomes a primary function of the nurse, while the patient is in danger of becoming an object in a dehumanized and routine-focused health-care system. The contemporary work of the nurse is to keep all body systems functioning. In the hospital, we give highly toxic drugs to maintain circulation, respiration, and elimination. We expertly monitor gases and pressures and rhythms and rates; we measure the input and output of bodily uids. We maintain machines and machine connections to the person. In the skilled nursing facility, we must have technological expertise but are also expected to keep up weights and food and uid intake and to promote mobility and skin integrity until the end of life. When people die, nurses pound on their chests and breathe for them. Death is perceived as defeat. When the perceived battle is lost, patients are often alone.

Social Isolation
Social death involves no longer being acknowledged or seen by other persons (Kastenbaum, 1995). Social death occurs as the seriously ill are progressively isolated from the living. In our action-oriented, beauty-preoccupied society, people who are chronically ill with life-threatening illnesses often experience social death before their actual physical death. These individuals experience little eye contact, minimal communication, and minimal caring. They may be discussed as if they are not there. Such discussion is an unfortunate and difcult-to-extinguish practice that takes place during medical rounds and when several nursing staff work together at the bedside of a patient.

Copyright 2006 by F. A. Davis.

Chapter 1

The End of Life and End-of-Life Caregiving

Until very recently in human history, death was an everyday reality that was impossible to deny. It did not occur in isolation. From early childhood, children witnessed the passing of siblings and parents, aunts and uncles, cousins and neighbors. Frequently, grandparents died before grandchildren ever knew them. Usually death came quickly; there were few measures to treat acute infection and injury, and little to prolong life with chronic illness. Caregiving was a family responsibility and the rituals before and after death offered comfort and meaning. Religious and social expectations surrounding death were a common and public part of community life. Today, most death occurs behind closed doors in institutional settings with professional caregivers. Many people are isolated from supportive communities and estranged from religious and/or spiritual practices. After the ill person enters the health-care system, he or she can expect social isolation. The spiritual and emotional realms are commonly ignored by caregivers whose focus is on solving the puzzles of disease and battling against death. Hospitalization involves removal of clothes and possessions, a work-up, connement in a narrow uncomfortable bed in a room without privacy, tests, punctures, intubations, and absolute obedience to strangers who often do not identify themselves. There often is no room to speak of anguish in a bureaucratic system that is moving faster and faster to process and discharge patients. The individual feels lost and abandoned when activities focus on the body and disregard spirit and emotion. In contrast, the hospice and palliative-care movements, described in the next chapter, seek to draw the patient and family into a supportive community that afrms humanity and quality of living at the end of life. Nursing at the end of life must challenge social isolation and reject professional detachment.

Professional Detachment
Exacerbating social isolation and in preparation to ght the war against death, physicians and nurses are socialized by colleagues and mentors to become detached from the humanity of those suffering. Medical students learn to redene human problems as depersonalized biomedical puzzles. Likewise, the nurses who are role models for nursing students sometimes demonstrate ways to withdraw from patient involvement in order to maintain professional composure. Often the focus is on maintaining routines and completing ordered regimens. This book invites all nurses to resist these dehumanizing tendencies when caring for the dying. Nurses should practice with appropriate technical expertise, but be aware of the tensions in society and within health care that tend to reduce the dying person to an object for technological intervention rather than a fellow human being. See Box 1-1, Humanization Goals, to identify nursing goals that humanize the dying person and deliberately counter the dehumanizing forces described in this chapter. The mechanistic view of human beings is the single greatest threat to professional nursing and to practices that seek to uphold human dignity, freedom, and quality of life

Copyright 2006 by F. A. Davis.

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Box 1-1

HUMANIZATION GOALS

Learn who the dying person is. Listen to his or her story. Honor the dying persons wishes. Question preoccupation with complicated medical interventions that ignores the reality of death approaching. Question inappropriate technology that is burdensome and futile. Create a comforting person-centered environment for caring. Insist on physical, emotional, and spiritual comfort. Refuse to participate in the conspiracy of silence about dying. Prevent isolation and abandonment of the dying. Encourage providers and loved ones to draw near.

(Mitchell, 2001). In the United States, the hospice movement has directly challenged the dehumanizing forces at the end of life. Described in detail in the next chapter, hospice was established in the United States in the 1970s to humanize care of the dying.

THE HOSPICE FAMILY CAREGIVING MODEL


In the mid 1990s, 20 years after the rst American hospices opened, the author interviewed 32 home visiting hospice nurse experts who had been recommended by their supervisors as nurses to whom others turned for hospice clinical advice (Zerwekh, 1995). The goal of the study was to capture the essence of hospice nursing practice by clearly describing the competencies of expert hospice nurses. The informants were asked to describe home visits during which they believed they were practicing hospice nursing at its best. Their 95 anecdotes of home visits were analyzed qualitatively to name nursing competencies that were repeated in the stories. The names of the categories were rened by a focus group comprising 10 of the nurses originally interviewed. Ten nursing competencies were identied at that time: Sustaining oneself Reaching out to meet fear Connecting Encouraging choice Speaking truth Strengthening the family Caring spiritually Guiding letting go Comforting Collaborating (Zerwekh, 1995)

The tree drawing also emerged from this focus group. The group envisioned an organizing framework that symbolized the relationship among the

Copyright 2006 by F. A. Davis.

Chapter 1

The End of Life and End-of-Life Caregiving

hospice nursing competencies. An outline did not work to explain the interrelationships. Geometric diagrams were also rejected. The group sought an organic model to explain their practice, and so a tree began to grow. The tree made the most sense as a metaphor for practice. Nursing at the end of life requires ongoing self-care for the nurse, and likewise the tree needs to be deeply rooted or it will fall over. Caregiving grows through connecting relationships and branches out with various competencies. See Figure 1-1, The Hospice Family Caregiving Model.
Figure 1-1 The Hospice Family Caregiving Model.

E SP

AKI N G TR UTH
Guiding letting go Ca rin gs pir itua lly

fo

r ti ng

Encouraging choice

Co

Collab

orating

ng t re

the

y mil a f the g n ni

Connecting

Reaching out to meet fear

Sustaining oneself

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The original hospice nursing competencies are running themes throughout this text. The reader will nd them expanded and used to illustrate major points in many chapters. They are described below, beginning with the roots of the tree. Each is illustrated by selections from the nurses stories. Some of these anecdotal accounts will reappear elsewhere in the text as they vividly illustrate practice concepts.

Sustaining Oneself
The root stabilizes the tree and draws in nourishment. The individual nurse must be strongly rooted in order to provide nursing at the end of life. See Figure 1-2, The Root of Hospice Caregiving. The stories of the interviewed nurses clearly revealed ve rootlets involved in sustaining oneself: Giving and receiving Staying healthy and open Grieving Letting go of personal agenda Replenishing oneself

Giving and receiving is illustrated by nurses who describe learning about living from those who are dying, feeling enriched and energized by the experience of knowing people who are living in their last days. One nurse explained:

Figure 1-2 The Root of Hospice Caregiving.

The Crown

Grieving

Giving and receiving

Letting go of personal agenda

Staying healthy

Replenishing oneself

The Root

Copyright 2006 by F. A. Davis.

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11

I feel so honored to be part of these peoples lives. I feel like they have given me such a gift. They are open to me in a time of their life that is so tender and so painful. It teaches me about being a nurse, being a human being, being respectful. Staying healthy and open involves the willingness to be involved and sincerely concerned with the welfare of patients and families. Dying people are sensitive to whether someone actually cares about them. Sincere concern requires maintaining ones own emotional health: I think we have to be pretty together inside. We have to be emotionally secure. That means were vulnerable and we have to be willing to risk. Grieving is an essential dimension of continuing to care for those who are suffering and dying. An expert nurse laments the lack of grieving in her current work environment: There has to be a place to express the enormous amount of grief. In my hospice job we could just go into the ofce and break down and cry together. Now Im in a highly reserved culture. Everything is nice, nice, nice. God forbid you should be anything but nice. I dont see feeling expressed by the team. I miss crying and soul. Not everyone needs to cry and talk, but everyone needs to grieve in their own way. One nurse explains her own unique process: You have to learn to grieve or you will be eaten up, burned out. For me, I watch sad dog movies. Letting go of personal agenda is learned through experience in nursing at the end of life. The realities of what can be accomplished realistically lead to the necessity of putting aside ones own goals and aspirations. A nurse explained when she rst understood this: I will forever be grateful to the night nurse on an oncology unit. I was caring for an AIDS patient and I thought he should accept that he was dying so he could nish his end-of-life business. She educated me that he had to do it in his own way. So I didnt go in with my do-goody intentions. It would have been a bad mistake. That wasnt what he wanted. Replenishing oneself involves deliberate efforts to renew oneself. This may include sleeping, exercising, praying, music, and being with friends and loved ones. After a particularly difcult encounter with a dying woman just her age, a hospice nurse describes going home: I lled the bathtub. I added bubbles and it smelled like roses. I poured a glass of wine. I put on the Beatles and slipped into the warm water. For a while, I lost track of time.

Copyright 2006 by F. A. Davis.

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Reaching Out to Meet Fear


The crown is the neck of the root of the tree. The crown is the place where the tree reaches above ground. The hospice nurses spoke about their practice requiring courage to reach out to meet fear. The nurse must confront her or his own fears of death and suffering while calming the patients fears. There are so many fears that need to be put at rest. For example, one nurse describes calming a terried patient: She was dreadfully afraid of dying gasping for breath, having horrendous air hunger as her last vision on this earth. She even felt that if there were too many people in the room, too much talk, there would be a drop in oxygen level in the room. I was the essence of calm and slow emotions. I let her tell me what she needed. I didnt label her fears as rational or irrational. I wasnt in her body breathing.

Connecting
The trunk of the tree reaches upward and connects the roots to the branches and leaves. In the Caregiving Tree, the process of connecting involves nurses developing a relationship with patient and loved ones before they can truly care for them. An authentic relationship is possible when the nurse is deeply rooted. Connecting includes three dimensions: Being there, hearing and asking, and deliberately building trust. Being there involves the practice of caring presence. As one nurse explained, The essence of me is sharing with the essence of them beyond the words were talking about. Hearing and asking involves deep listening to the stories of patient and loved ones. For example, a nurse explains, I go in and they just need to tell their stories. I try to give them space to tell me where theyre coming from. Expert nurses also ask difcult questions such as, Tell me what exactly is hardest for you right now. These are the kinds of questions that many are afraid to bring up, because the answers are painful to hear. The third dimension of Connecting is deliberately building trust. A nurse describes building trust in an extremely challenging environment: She lived without furniture in her roach infested apartment and she wouldnt talk to me. We just spent a long time together. I knew that she was basically waiting to nd out what I would say. Sometimes Black people see White people and are just waiting for the insults, the indirect racism, whatever. God knows we do it! Finally, I told her, you know, I might make some mistakes. I want you to be patient with me. Im here to listen, and to make sure you dont have pain, and Ill do everything I can to keep you at home and to hold your children next to you. And she started crying and said thats all she wanted. The nurses deliberately used strategies to ensure that patients saw them as trustworthy. Those included taking time, respecting privacy, making

Copyright 2006 by F. A. Davis.

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concrete interventions requested by patients, encouraging patients to stay in control, and consistently speaking the truth.

Encouraging Choice
The Family Caregiving Model envisions this competency as a branch growing upward out of the practice of Connecting. In the United States, promoting selfdetermination is so essential to hospice care that all other competencies extend as limbs from Encouraging Choice in the center. Hospice nurses rmly believe that people should die as they choose. This competency involves believing that people should choose, explaining options, assessing their choices, accepting those choices, and facilitating the patient decision process. One nurse summarized, We empower them to live and die the way they want to. Sometimes the nurses advocated for choice when the medical or social system resisted. In the process of facilitating patient and family choices, the nurse must sometimes completely let go of her own agenda and respect theirs: I had to go along with a lot of compromises about cleanliness and asepsis in the way they did all his bandages and bags and IVs in order to give them control. There was a tremendous amount of technical care in the last couple of weeks. Then he started bleeding, and actually he wanted to be in the tub, she helped him in. There was blood everywhere. The water turned bright red.

Speaking Truth
Truth telling is visualized in the model as encircling the entire top of the tree, illustrating that speaking truth encompasses the entire practice. Choice is made possible only when patients understand the truth about their condition. Hospice nurses are willing to speak openly about terminal illness, the meaning of symptoms, end-of-life processes, and realistic goals that can be achieved with curative and palliative therapies. The hospice nurse is sometimes the rst person they can talk to about the issues that happen. Dimensions of speaking truth include asking difcult questions and saying difcult words, speaking truthfully when the truth is in transition and often uncertain, and facing the normal human tendency to avoid and deny the truth. One nurse describes truth telling at a family conference: I began, Well you know your mothers got this illness and is not curable and she will die from this. And thats what were all here about, to try and gure out what your Mom would want. Then there was silence and a sense of relief. Then one of the daughters started to cry and then they started to ask questions. What does this symptom mean? How can we help her? What about eating? And I explained that their mom could only eat so much. There really isnt anything we can do about that. Let her eat what she wants and if she wants to eat, great, and if not, let her alone. Then I went into the discussion of codes. They decided they didnt want

Copyright 2006 by F. A. Davis.

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to resuscitate her. So, its just the ability to be where people are at, and to just use the words that need to be said.

Strengthening the Family


Hospice care in the home requires caregiving by family, dened as people who are related by blood, marital ties, or personal commitment. Strengthening the family is a branch of the tree that develops out of encouraging choice. The nurses shared extensive anecdotes about their work to strengthen families. Under the Hospice Medicare Benet, a person cannot receive hospice care unless they have a competent family caregiver. Strengthening the family involved assessment, developing family ability, going between family members to discuss issues they could not face in direct conversation, and recognizing family caregiving limitations. One nurse described family caregiving at the end of life as shepherding them through confusion. The complexity of this task is illustrated in one nurses story: With this particular family, they were trying to do good, but they didnt even know where to begin. The decline of this lady was very rapid. They were real proud of themselves because they had gotten her home with hospital bed and commode. Very rapidly she had become bedbound. They needed to gure out how to provide her physical care and still continue life as a family. When you go into a house, you not only have to watch the main caregiver and that persons support, but you have to watch the rest of the family and how they are dealing with it. They had a teenager and a 9year-old, both acting out, and grandma was dying.

Caring Spiritually
Caring spiritually involves recognizing spiritual issues, dialogue about spiritual issues, fostering reconciliation, and sharing near-death experiences. Caring spiritually is a branch on the Caregiving Tree. Recognizing spiritual issues involves acknowledging matters of religious belief as well as struggles with issues such as the meaning and purpose of life, forgiveness of past hurts, and transcendence. Hospice team members believe that unresolved spiritual issues, unrest in the soul, sometimes cause pain and agitation that is very difcult to relieve. Dialogue about spiritual issues involves deep listening and shared reection. Nurses ask questions like, What has life really meant for you? Fostering reconciliation involves resolving relationships with others and with God. Nurses encourage this period as a window of opportunity to heal past estrangements. They also need to integrate their life with their beliefs and somehow nd congruence. A nurse described a dramatic experience with a suicidal patient: As he began to process all these things that were coming up from his past, he became extremely upset. He decided that he was

Copyright 2006 by F. A. Davis.

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going to kill himself because he was not worthy of living because of some of the things in the past. I got a phone call one Sunday, and instead of going to church, I talked to him for a good hour and a half about why he was so desperate and considering using a gun in front of his wife. The challenge is to be nonjudgmental and allow people to know that they were doing the very best job with the skills they had at that time in their life. If we can be nonjudgmental, then they can be less judgmental. After that day, he started work with our chaplain.

Guiding Letting Go
Illustrated as another branch at the top of the Caregiving Tree, the process of helping people let go of the life they have known is unique to end-of-life nursing and was vividly described in the hospice nurse anecdotes. This involves letting go of former activities and hopes, letting go of life, predicting imminent dying, and being present at the moment of death. Guiding a dying person to let go involves listening to emotions and helping the person nd resolution as he or she must give up activities, relationships, and life itself. The losses involved are extraordinary and occur over and over again until the moment of death. When patients linger close to death, hospice nurses often look for unresolved issues that prevent patients from relaxing and dying. What business is unnished? What words remain unspoken? Experience nursing at the end of life often results in nurses being able to predict imminent death. Being present at the time of death elicits memorable nursing experiences. Nurses alert the family that death is imminent, explain the meaning of signs and symptoms, attempt to gather the family, and encourage nal good-byes and traditional rituals as chosen. Here is an example from the authors experience with an extended Filipino family: The dominating sound, overcoming gunre coming from the T.V., is the 40-in-a-minute rasping, gurgling breaths from the emaciated shrunken occupant of the bed. I touched this family patriarch tentatively, as family members ranging from toddlers to young adults gathered around the bed. They had placed a Crucix in his hands. His pupils were xed, one midpoint and one constricted. His lips were cracked and his tongue covered with brown-red debris. With and without a stethoscope, his lungs were overcome with wheezing and crackles. His heart was regular at 124, but failing to move the blood all the way into the periphery. His feet and legs were icy purple without pulses. Maybe 100 cc of thick dark brown urine sat stagnant in the bag hanging from the side of the bed. Until today, they had been giving him liquids like orange juice, which it sounded like he was unable to swallow, so that it went right into his lungs and led to ts of coughing. He was without any signs of suffering. I reviewed basic care measures with the oldest son, particularly care of his mouth and lips, turning, and how to use morphine under the

Copyright 2006 by F. A. Davis.

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tongue if he had any signs of distress with breathing. I talked about hearing being the last sense to be lost before dying. Death appeared imminent, so I urged them to say their good-byes and pray together. Hearing my prediction, the family decided to call the priest.

Comforting
Comforting branches out of Connecting and Encouraging Choice. The interviewed nurses described an extraordinary range of comforting strategies. Comforting at the end of life requires close collaboration with the physician and strengthening the family, the primary caregivers for hospice home care. The nurses interviewed in the early 1990s practiced with a high level of autonomy and exibility to provide comforting interventions. Their stories identied eight overlapping comforting approaches: Providing hands on care Anticipating comfort needs Trying multiple options Balancing pharmacological effects Organizing and reorganizing regimens Making major changes in regimens Initiating nontraditional therapies Facing limits

Assertive comforting strategies and a high level of collaboration with physicians are vividly described in the nurses narratives. Following are two that illustrate the high level of nurse expertise in pain and symptom management to markedly improve end-of-life quality: She needed to be on TPN because they still hoped she would be getting better and that her stula would heal. She had a lot of shortness of breath and rales. She had edema from head to toe. Her legs were like planks. They were doing periodic paracentesis for the ascites. It was obvious to me that she was getting too much uid. So, I called the doctor and we reduced the dextrose and lipids and the total volume she received. She lost 15 pounds in a week and a half, and her lungs cleared. This man had been on increasing doses of MS Contin and was on sublingual morphine for breakthrough pain and nding no relief from an intractable left shoulder pain that appeared to me to be likely due to bony mets. He also had a nerve component with sharp, shooting pain that went down his ngertips, and at times left him without function of his left side. It incapacitated him completely, left him grumpy and distanced from his family. We started him on Trilisate 750 mg every 12 hours. We use Trilisate as our NSAID for pain because it doesnt affect platelet aggregation. Twenty-four hours after starting the Trilisate, he was having side

Copyright 2006 by F. A. Davis.

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effects from the morphine: somnolence, constricted pupils, respiratory depression. So we backed off on the morphine and let the Trilisate work. He remained comfortable for several weeks until he started having sharp, shooting pains. We put him on Tegretol, and he started getting out of bed. This man had been in bed for months.

Collaborating
All hospice nursing practice requires collaboration, illustrated as an essential branch on the Caregiving Tree. Hospice teams confer around the table and are constantly conferring with each other in one-to-one conversation in person and by telephone. Collaborative practice with physicians and other providers with prescribing privileges is essential to providing comfort. The nurses had many stories of mutually respectful and cooperative relationships. Most physicians were described as listening and honoring their experience and recommendations. Physicians who were resistant to hearing and honoring nurse expertise presented special challenges. Nurses struggled to approach them in a way that they would listen. One nurse described this challenge: Some feel like youre trying to tell them what their business is. You have to be tenacious even when a physician may feel that youre being a pain. You know that there are things that can be tried. The nurse is usually the rst visitor to assess needs in the home, and then she or he brings in other team members that might include social workers, spiritual counselors, nursing assistants, therapists of various kinds, and volunteers. The nurse experts believed that patient and family were better understood and served through an interdisciplinary approach. Frequently, the nurse is challenged to pull in help when there is family or patient resistance. Such resistance is caused by shame at needing any help; denial of progressive dependency needs; and families with boundaries to outside interference, feelings of need to control, and desires for privacy. A nurse describes victory over resistance: It took me 3 to 4 months to get her to accept anyone beside me to come in. Finally, the daughter agreed to relinquish her need to be sole caregiver for her mother. We nally were able to bring in a home health aide they trusted. We placed a volunteer who works quite a bit with children to give them all kinds of attention. It was a real victory for me. Not just to get them more help, but because I really like working as a team. Having team input makes you see other aspects of somebody and do a better job of caring for them as whole people.

Transformation of the Hospice Family Caregiving Model


The Hospice Family Caregiving Model was published 10 years before completion of this text. Nursing at the End of Life introduces a new drawing and reorganized framework that is more current and tailored to a comprehensive textbook and that more accurately represents end-of-life care today.

Copyright 2006 by F. A. Davis.

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CONCEPTS

IN

ACTION

Jeanne M., age 44, was a divorced single mother of two teenage sons. Over the previous 3 years, Jeanne had lived with advanced ovarian cancer for which she received aggressive chemotherapy. She continued to work as a teachers aide, using up all her sick leave, until her nal hospitalization. Although Jeanne and her mother, a retired registered nurse, both feared that Jeanne was not improving, all conversation with her health professionals had been about therapies and the function of her various body organs. They wanted to stay positive, so there had been no conversations about code stats or a living will. She expressed no wishes about the future of her sons and had not spoken to them about her possible death. Although a practicing Catholic, she had not requested the Sacrament of the Sick (last rites) and no one had suggested it. Then she became acutely ill and was admitted to the medical intensive care unit with renal failure and acute respiratory distress. In the ICU, she was immediately placed on a ventilator and dialyzed. Her blood pressure dropped and blood appeared in her Foley catheter. Sepsis with disseminated intravascular clotting was likely. Throughout her nal evening, Jeanne was agitated and confused, complaining of severe pain throughout her tumor-distended abdomen and extending into her right hip. She had received meperidine (Demerol) 50 mg IM twice in the previous 24 hours. Her mother and sister had been allowed to visit for no more than 10 minutes at a time, until encouraged to go home and get some rest. They were assured that her lab values were improving. Jeanne arrested. A full code failed at 10:03 PM, 23 hours after admission. 1. How would you characterize Jeannes last day of life? 2. How did prognostic uncertainty affect how she died? 3. How did social isolation and professional detachment affect the way her care was managed both before her acute episode and during it? 4. What more might have been done to care for Jeanne and her family during her treatment for aggressive ovarian cancer? Consider the Humanization Goals in Box 1-1. 5. In Jeannes case, technological interventions were appropriate with signicant probability of reversing her condition. Nevertheless, explain how her care could have been humanized in the ICU. 6. Imagine an alternative ending with Jeanne discharged home, stable but close to death. Following a hospice referral, apply the 10 competencies to propose hospice nursing interventions for Jeanne and her family.

Copyright 2006 by F. A. Davis.

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19

References
Byock, I. (1997). Dying well: peace and possibilities at the end of life. New York: Riverhead Books. Callahan, D. (1999). False hopes: overcoming the obstacles to a sustainable, affordable medicine. New Brunswick, NJ: Rutgers University Press. Hooyman, N., & Kiyak, H. (2005). Social gerontology (7th ed.). Boston: Pearson. Kastenbaum, R. J. (1995). Death, society, and human experience. Boston: Allyn & Bacon. Mitchell, G. (2001). Pictures of paradox: Technology, nursing, and human science. In R. Locsin (Ed.), Advancing

technology, caring, and nursing. Westport, CT: Auburn House. Moller, D. W. (2000). Lifes end: Technocratic dying in an age of spiritual yearning. Amityville, NY: Baywood Publishing. Nuland, S. B. (1994). How we die: Reections on lifes nal chapter. New York: Alfred A. Knopf. ONeill, P. (10 April, 2005). Same fate, different ways. The Oregonian, pp. B1B2. Oregon Hospice Association. (2005). Hospice FAQ. Retrieved from www.oregonhospice.org. Zerwekh, J. (1995). A hospice family caregiving model. The Hospice Journal, 10, 2744.

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C H A P T E R

Hospice and Palliative Care


ELAINE MCINTOSH AND JOYCE ZERWEKH

Philosophical Reections She was calm, she seemed ready. Her affairs were in order. She was respected and loved. In short, Mrs. Davis was having an excellent death. A week later, when she had actually died, I felt this all the more because she had left, in me, the indelible knowledge that such a death is possible. For myself, for all of us, I want a death like Mrs. Davis. When we will ripen and ripen further, richly as fruit, and then fall slowly into the caring arms of our friends and other people we know.
ALICE WALKER

Learning Objectives 1. Identify the social forces that led to the hospice movement. 2. Contrast the ideals of the hospice movement with the philosophy of patient care that continues to dominate American health care. 3. Explain the uniqueness of St. Christophers Hospice and the contributions of Cicely Saunders. 4. Describe key features of American hospices and requirements of the Hospice Medicare Benet. 5. Explain the effects of hospice on individual patient experiences. 6. Explain the reasons for the palliative-care movement. 7. Explain the advantages of a hospital developing a palliative care program. 8. Articulate values and practices within contemporary health care that are contrary to palliative goals. 9. Be able to explain hospice services to dying patients and their families. 21

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This chapter provides a foundation for understanding hospice and palliative care, which are organized to provide quality end-of-life care. The hospice and palliative-care movements have provided the groundwork that sustains practice illustrated by the End-of-Life Caregiving Model. Hospices are programs that comfort and care for the dying. Palliative care is dened as comforting and person-centered measures for those with advanced, lifethreatening illness. Palliative-care programs are expanding the number of people who can receive palliative care beyond those receiving care in hospices, which have narrow eligibility requirements for patients to be admitted. This chapter examines the hospice movement, including its development in England and in the United States. The Medicare hospice requirements are presented and contemporary trends and limitations explored. The chapter continues with a description of the palliative-care movement in the United States and reasons for resistance to the integration of palliative goals into mainstream medicine.

THE HOSPICE MOVEMENT


Into the last quarter of the 20th century, as pharmacological and technological treatment of the diseased body became more and more successful, attention to the mind and spirit was sidelined. When treatment failed to extend life, the humanity of the dying person was often forgotten in the maze of aggressive treatment regimens. The end result was often a helpless dehumanized person, penetrated by many tubes and lines. Families were restrained, allowed only limited visiting, lest they interfere with increasingly futile interventions. Death was not discussed; the subject was forbidden. Death meant failure. Medical decisions were paternalistic, based on the physicians desire to offer the most aggressive life-prolonging care available. The voices of the patient and family were seldom heard. But with consumerism on the rise in health care, patients began to take more of a role in steering the course of their care. Patients and their loved ones began to question whether yet another round of chemotherapy was worth the suffering it would cause. Medical ethics began to strongly emphasize patients autonomy and rights to make their own health-care decisions. Some outspoken physicians began to recognize that just because a medical technology or treatment exists, does not necessarily mean that it should be used. Some outspoken nurses began to recognize that death is a natural part of life, and that there comes a time when the most appropriate goals for the patient are: Comfort Quality of life Reconciliation of conicts with loved ones Making a time of nal illness also a time of peace

It was in this environment that the hospice movement developed. It grew out of four societal mandates for change that became prominent in the 1970s. The mandates asserted that:

Copyright 2006 by F. A. Davis.

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1. Terminally ill persons should have access to appropriate care that attended to body, mind, and spirit. 2. Death should not be a taboo subject. 3. Medical technology needed to be applied more judiciously. 4. Patients had the right to be more involved in their own treatment decisions. In addressing these public concerns, hospice took a more holistic view of health and health care, recognizing the need to care for the entire person: body, mind, and spirit. The overriding principle behind hospice was the notion that patients needed and deserved an alternative to an aggressive, cure-oriented, hospital-based system of care that generally failed to address the real issues of concern to the dying.

The overriding principle behind hospice was the notion that patients needed and deserved an alternative to an aggressive, cure-oriented, hospital-based system of care that generally failed to address the real issues of concern to the dying.

The early developers of hospice, often nurses, were highly idealistic and passionate in their drive to create a better way to care for the dying. Reacting to the cure at any cost syndrome, which characterized most of medicine, health-care professionals and lay people alike began to realize that people with terminal illnesses were often denied the truth of their situations and given aggressive treatments well beyond when there was hope of cure or remission. Sometimes they were forced to endure pain and suffering as painrelieving medications were withheld due to the lack of knowledge of physicians, fears of addiction, and a general lack of priority on keeping the patient comfortable. When all possible treatments aimed at curing the disease had been exhausted, often it was said, There is nothing more that can be done. Hospice challenged that idea with another way of talking. For example, a hospice representative might say to the patient, Although we may not be able to cure your disease, there is a great deal we can do for you. We can keep you comfortable, help you achieve quality of life for however much time remains, help your family, pray with you, and stay with you until the end. The hospice movement has been compared with the childbirth education movement, which emerged in the 1960s. Until that time, fathers were barred from delivery rooms, mothers were often heavily anesthetized, and patients received little education about what to expect. Now, most women have the opportunity to attend childbirth education classes and have the coach of their choosing with them in the delivery room. Women have choices about what type and amount of pain-relieving efforts they want during labor and delivery, unlike the days when the physician made every decision. Hospice parallels the values expressed in the childbirth movement: inclusion of family, encouraging the patient to be in control of decisions,

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appropriate comfort measures, compassion and support during an important and difcult time.

Hospice parallels the values expressed in the childbirth movement: inclusion of family, encouraging the patient to be in control of decisions, appropriate comfort measures, compassion and support during an important and difcult time.

England to North America


Hospice is derived from the Latin words hospes, meaning both host and guest, and hospitium, referring to an inn or a place of refuge for travelers. Hospices began in medieval Europe as refuges for the sick and dying. The founders of the early hospices in America rst looked to England where a new model of care for the dying had already been developed. In 1967, a British physician, Cicely Saunders, founded St. Christophers Hospice. Dr. Saunders expanded her professional credentials from nurse to social worker to physician (Stoddard, 1978). As a social worker, she was moved by witnessing a young man named David struggle with terminal cancer. Having talked openly about his dying, they discussed the need for a place better suited to caring for terminal patients than a hospital ward. At his death, he left her a gift of 500 English pounds. He had told her, I will be a window in your home. Although it took her 19 years, she opened St. Christophers Hospice in Sydenham, England, and credits this young man, David Tasma, as her source of inspiration (Saunders, 1976). As Americans began to study the needs of the dying, many made the pilgrimage to study with Dr. Saunders in England. The early hospice literature is lled with moving accounts of what they found at St. Christophers. Thelma Ingles, former chair of the graduate program at Duke University School of Nursing, traveled to St. Christophers to work as a staff nurse and study the care. She told the story of a man who worked there. I remember the gentle kindness of the man who delivered the morning paper to the patients. He knew each patient by name, always had a few pleasant words to say, and was ready to make an extra effort to fulll any unexpected request. One morning I said to him, Do you know how much the patients love you? He looked at me quietly for a moment and then said, St. Christophers does this to you, you know. Here there is always room for love (Hamilton & Reid, 1980, p. 48). Cicely Saunders afrmation of the dignity of each dying person is expressed in her famous quote, You matter because you are you. You matter to the last moment of life, and we will do all we can, not only to help you die peacefully, but also to live until you die (Stoddard, 1978, p. 91).

You matter because you are you.You matter to the last moment of life, and we will do all we can, not only to help you die peacefully, but also to live until you die. (Saunders in Stoddard, 1978, p. 91)

Copyright 2006 by F. A. Davis.

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In addition to the patient-oriented, loving kindness found at St. Christophers, sophisticated medical care aimed at ensuring patient comfort was given the highest priority. A striking feature of St. Christophers was the demonstration that oral opioids administered around the clock were highly effective to control pain. Previously, it had been assumed that only injections would control pain, and that they had to be administered sparingly, only when the patients complaint became severe. English hospice was within the walls of inpatient facilities, designed and built specically to service the hospice population. When the Americans began to seriously develop hospices, home care emerged as the primary setting in which to deliver hospice care. In North America, two individuals pioneered the development of specialized programs to care for the dying (Stoddard, 1978). Dr. Balfour Mount founded the Palliative-Care Program at the Royal Victoria Hospital in Montreal, Canada. Dr. Mount inspired many American physicians who sought a philosophy of medicine that recognized that death is natural and dying needs excellent medical management. Florence Wald was Dean of the Yale School of Nursing and the founder of the rst American hospice in Branford, Connecticut.

The American TranslationFocus on Home Care


In the United States, concerns about escalating health-care costs were already well established at the beginnings of the hospice movement in the 1970s. Growing emphasis was being placed on saving money by shortening hospital stays and keeping patients at home. This meant that nding funds to build more inpatient beds in order to provide hospice care was unlikely. Therefore, the American hospice developers focused on providing hospice care in the patients home. The American version of hospice emerged with certain characteristics: emphasis on home care, control of symptoms, emotional and spiritual counseling for patient and family, bereavement support, volunteers providing important services, and programs to support team members. See Box 2-1, Common Characteristics of American Hospices. An interdisciplinary team delivers the care. The hospice team consists of nurses, social workers, chaplains, a medical director, home health aides, and volunteers. Other services often include dietary counseling, physical therapy, and occupational therapy. Art or music therapy, massage, therapeutic touch, or other complementary therapies have sometimes been added. Some hospice programs have developed as separate health-care organizations, but most are now services provided by hospitals or home health-care agencies. The Medicare Model In the early days of the American hospice movement, there was a philosophy and program of care, but there was no consistent funding. It came to pass

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Box 2-1

COMMON CHARACTERISTICS OF AMERICAN HOSPICES

Coordinated home care, with inpatient care being provided if needed under the direction of the hospice Emphasis on control of pain and other symptoms Provision of emotional support and counseling Availability of spiritual care Recognition that the entire family constitutes the unit of care Bereavement support after the patients death Active role for volunteers Programs to support staff and address burnout

that hospice care could not be made available to broad numbers of people without Medicare and private insurance coverage. Because hospice held the promise of saving money by keeping people at home rather than in hospitals, in l982, Congress created a hospice benet in the Medicare program (Public Law 97-248, 1982). (See Box 2-2.) Congress feared that the hospice program might cost far more than originally envisioned. In turn, certain provisions were built into the program to restrain its costs and to ensure that the emphasis in hospice continued to be on home care. These requirements include the following (Marrelli, 1999): The patient has a prognosis of 6 months or less. Hospice care is to be palliative or comfort-oriented, rather than curative.

Box 2-2

SERVICES COVERED UNDER THE MEDICARE HOSPICE BENEFIT CARE BY NURSE AND PHYSICIAN

Home health aide and homemaker Occupational, physical, and speech therapy Counseling and social work Chaplain Volunteer help to visit, shop, transport, do chores Medical equipment and supplies Medication to relieve symptoms Inpatient respite care to relieve caregivers

Source: From Scala-Foley, Caruso, Archer, and Reinhard (2004).

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The payment is a at rate paid to hospice for each day the patient is in the program, regardless of the cost of care. This is a departure from the previous method of payment, which was based on actual cost. The patient elects or signs up for the hospice benet and in so doing waives regular Medicare benets. That is, the patient exchanges the benets received from the normal Medicare program in order to receive the benets from the hospice Medicare program. Care across all settings is coordinated and arranged by the hospice. This makes the hospice team both the clinical case manager and the nancial case manager. Four levels of care have been created: 1. Routine home care; 2. Continuous home care when the patients condition is acute and death is imminent; 3. Inpatient care (usually in a hospital) for acute symptom relief; 4. Respite care (usually in a nursing home) to relieve family caregivers. No more than 20% of the days of care can be in either of the two institutional levels of care. There must be 24-hour/7-day-a-week availability of hospice staff for consultation or emergency visits. Previous to hospice, it was rare that anyone other than the attending physician took call. When hospice came along, nurses began to respond to the patients emergency needs in the middle of the night. Congress also recognized that in order for hospice to work, patients had to have access to medications, supplies, and services that would allow them to remain at home. Therefore, for the rst time, coverage for prescription drugs for routine ongoing use at home was included in the Medicare payment for hospice.

Internet Reference Box See the Web site for the National Hospice and Palliative Care Organization at www.nhpco.org. Hospice Net at www.hospicenet.org is designed to be a resource for patients and families. The Medicare Hospice Benet is clearly outlined at this site. The Role of the Nurse in Hospice Although the interdisciplinary group comprises the care team, the nurses role on the team is central. The nurse is the case manager and usually visits the patient more frequently than other team members, often two to three times a week, whereas the other team members might visit once every week or every other week. Patients come to know and depend on their nurse as their guide, teacher, comforter, communicator, and liaison to the physician.

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Nurses guide the symptom management and work closely with the patients personal physician to ensure the patients comfort. One nurse explains her role in controlling symptoms for patients at home: My understanding of pathophysiology and pharmaceuticals makes me more condent during home visits. You always have to consider options in keeping ahead of symptoms. If one combination of medications doesnt work, try organizing pills in a different way or time. Maybe we need a different drug or a different dose. Maybe we should try complementary therapies. I feel like Im making a little custom-made suit every time I go on a visit. I tailor the plan to where theyre at with physical and psychological comfort. The doctors trust my recommendations.

Im making a little custom-made suit every time I go on a visit.

Hospice practice presents remarkable opportunity for nurses. It is perhaps the most independent practice role available, short of a nurse practitioner, and offers the opportunityactually the requirementthat the nurse treat the patient as a complex being, with physical, spiritual, and emotional dimensions. The expert hospice nurse makes comprehensive assessments and is deeply knowledgeable about pain and symptom management, including the pharmacology, side effects, and efcacy of sophisticated medications and treatments. She is also very strong in psychosocial nursing skills. The course of care for the patient is largely determined by the nurses intervention. The well-managed hospice case is uneventful and proceeds without trips to the hospital or emergency room, largely because each crisis or change has been anticipated. It is the nurse who makes this smooth nal course of illness possible. See Box 2-3, Speechless in Seattle, to consider the authors story of easing the nal course of illness during an initial home visit.

The well-managed hospice case is uneventful and proceeds without trips to the hospital or emergency room, largely because each crisis or change has been anticipated. It is the nurse who makes this smooth course of illness possible.

Planting the Seeds

WHAT TO LOOK FOR WHEN REFERRING TO HOSPICE Is the medical director certied in hospice and palliative medicine? Medical oversight should be undertaken by physicians with symptom management expertise. Is there leadership by a nurse who is certied in hospice and palliative nursing?

Copyright 2006 by F. A. Davis.

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Box 2-3

SPEECHLESS IN SEATTLE: FIRST HOME HOSPICE VISIT

The hospice nurse secured her bag over her shoulder and inched along the ramp that sloped down to the tiny weathered houseboat. A stoopshouldered man with red eyes and a red nose greeted her and pulled her into a smoky bedroom. He was Earl, the patients husband. His wife was a new referral to hospice for an expanding brain tumor. His words tumbled out of his mouth, Yesterday she was ne. Today shes choking on water. She wont talk to me. She cant stand up. What can I do? What does it mean? Its a nightmare. The nurse investigated further to learn that Marge had eaten Swiss steak and peas the evening beforehand and was able to walk to the kitchen table. She had been able to speak in brief sentences and could follow instructions. The nurse examined her headto-toe to identify a at expression, moon face, no ability to follow instructions, evidence of urinary incontinence, cyanosis, mottling in her lower legs, BP 76/30, and periods of 30 second apnea. Nursing interventions included calling the physician to report her terminal status and ask him to consider prescribing an increased dose of dexamethasone that might reduce the swelling around the tumor. He had a long-standing collaborative relationship with the nurse, and agreed to increase the dose in hopes of achieving temporary improvement. The nurse sat down at the kitchen table with Marges sister, her son, and Earl to discuss the disease course, possible reasons for Marges deterioration, and what to expect. They concocted a thick frozen yogurt shake that she was able to swallow. This meant that the dexamethasone, analgesics, anti-convulsants, and laxatives could be administered by this route until she stopped swallowing. The family returned to the bedroom to learn how to care for an incontinent bedridden patient. The nurse ordered a hospital bed and diapers from a medical supply house. The signs of imminent death were reviewed with Earl, and the nurse gave him the hospice on-call nurse number. Before she could leave, the nurse facilitated an emotional 20-minute family discussion of whether or not they would call 911 if she stopped breathing. They all agreed that they would call the hospice instead of the paramedics. They agreed to a visit from the hospice chaplain and considered beginning 24-hour continuous care because death was imminent.

Does the hospice have a staff person whose job is to evaluate and ensure quality of care? What kind of bereavement program is offered? Is the service provided by qualied staff who are not volunteers? What is the stafng ratio of nurses to patients? One home visiting RN to every 10 patients indicates quality.

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Is the hospice for-prot or not-for-prot? The not-for-prot health-care organization focuses on its mission. The for-prot hospice must make money to compensate owners or shareholders. Both can provide good care.

Growth and Changes in Hospice over Time


Who receives hospice, for how long, and from what type of organization has changed considerably since hospices inception. Initially, nearly all hospice patients had cancer because its terminal phase was predictable. Eventually, patients with other diagnoses began to be admitted, including those with end-stage cardiac and respiratory illness; neurological diseases, especially ALS; kidney or liver disease; Alzheimers dementia; and general debility of the frail elderly who are dying of multiple causes. Originally, nearly all patients were cared for in their private homes. In the mid 1980s, Medicare allowed hospice to admit patients who were residents of nursing homes. After initially limiting payment for hospice care to a maximum of 210 days, in 1990, Congress authorized payment for care for an unlimited length of time, as long as the patient meets certain clinical criteria (Omnibus Budget Reconciliation, 1990). The average length of stay in hospice has shortened. With uncertainty surrounding the lifespan of individuals with diseases that were once rapid death sentences, referrals are made very late in the disease process. For instance, AIDS used to be a rapid death sentence and now it is a chronic life-limiting disease. As time has passed and hospices have become more a part of the mainstream of health care, they have been subject to some of the same challenges other types of health-care providers experience, as well as some that are unique to hospice. These obstacles include abuse by some unscrupulous organizations, nancial pressures, competition, and labor shortages. Death denial in American culture continues to plague the hospice movement so that patients and their providers limit discussion about end-of-life issues, patients are referred too late or not at all, and their symptoms too often are not relieved until hospice admission. The median length of hospice stay before death is 15 days (Later Referrals, 2004) with many patients receiving hospice care for only 2 or 3 days before death. Short hospice stays limit the possibility of making a difference at the end of life. From Charity to Business Hospices began as highly idealistic, not-for-prot organizations, largely supported by grants and donations. For the rst 15 years of their development, hospices were almost exclusively nonprot. However, once reimbursement from Medicare and other insurers was rmly established and the patient population expanded to include residents of nursing homes, prot-driven organizations have been eager to establish themselves as hospices. Medicare payment for hospice is highly reliable, so that prots can be abundant. In

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many communities today, there is incendiary competition for the hospice market share. Unless restricted by state law, almost anyone can open a hospice with very little investment or necessarily any expertise. The proliferation of hospice organizations has resulted in uneven quality, and, in some communities, considerable confusion about what the consumer can expect from a hospice. To understand the impact of quality hospice care, lets turn to the experience of one patient. Mrs. Albert was 78 years old. After 35 years of marriage, she went through a very painful divorce and returned to the city of her birth to live alone, but close to her two adult children. About 1 year after her move, she was found to have metastatic lung cancer with seizures caused by brain metastases. She received radiation and chemotherapy, which achieved a period of stability. After a few months, seizure activity resumed, pain became a problem, and she chose not to undergo a new course of chemotherapy because of her rapid decline. During a brief hospitalization brought on by a respiratory crisis, her oncologist talked with her and her children, told them that further treatment was unlikely to help, and said that it was a good time to start hospice care. The family agreed, so the physician made a referral to the community hospice. During the initial visit, the hospice nurse identied the history and general physical needs of the patient and the practical aspects of her living situation. She observed the son had some distress and anger directed at the physicians and hospital, and that the daughter was not condent in her ability to provide the needed care, given her job and responsibility for her own teenage children. The nurse also observed Mrs. Alberts pattern of appeasing her son and trying to go along with his wishes, and that communication between the son and daughter was limited and somewhat stilted. This initial assessment provided information upon which to begin the plan of care. The nurse ordered medications, oxygen, a hospital bed, and wheelchair, all to be in the home at the time of the patients arrival. The plan of care for this family included the following elements: Teaching regarding the disease course and comforting care Maintaining the patients comfort and independence as long as possible Providing support and opportunity for the son to address his emotional distress Developing emotional and practical support for the daughter to permit her to meet family and job obligations Developing a caregiving system to allow Mrs. Albert to remain at home if at all possible, or, if not, to ensure a smooth transfer elsewhere Assisting with family communications through the course of care Over the subsequent 4 weeks, hospice nurses, aides, social workers, and a pastoral counselor all became involved with the family. The patients primary symptoms were pain and shortness of breath. After a period of

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adjusting drug dosages, she felt comfortable with a long-acting opioid and doses of short-acting medication for events when the pain broke through. She also needed medications for sleeping and anxiety, which the hospice nurse suggested to the attending physician who was familiar with hospice and with ordering whatever was needed for symptom management. In her last 2 weeks, she became almost entirely bed-bound, and the family chose to supplement their own caregiving with privately hired nurses aides. The nurse instructed the family in turning, positioning, bathing, and managing bowel and bladder needs. In her last week of life, she had severe difculty breathing, which the hospice nurse had anticipated with emergency medications ready in the kitchen cupboard and family instructed in their use. To control seizures, the medications and routes were changed several times by the hospice nurse working closely with the prescribing physician. The psychosocial and spiritual issues that surfaced during the care provided opportunity for everyone to review their familys biography and speak of memories, both good and bad. As the social worker and chaplain made their visits, their gentle inquiries revealed the familys pivotal events: the parents divorce and the loss of another daughter who was killed in a drunk-driving accident. Although both of these events occurred many years ago, everyone still felt great pain; these subjects were never discussed. Neither of the adult children was in contact with their father, who had remarried. He was very well off nancially and the rest of the family did not enjoy great nancial success. The son felt abandoned and resented his fathers success. Ultimately, the social worker and nurse facilitated several important conversations. The siblings spoke together of their parents divorce and its impact on them. The patient spoke of the loss of her daughter and, in a visit with the chaplain, sobbed over this and her subsequent loss of faith. Conversations about family nances, the funeral, and other practical matters were made possible because of the neutral and therapeutic presence of the hospice team members. The hospice team encouraged the involvement of the grandchildren, 10 and 15 years old. Small tasks were given to the children. They were informed about what was happening, and encouraged to visit their grandmother as much as possible. A special bond had always existed between the patient and her 15-year-old granddaughter, who ultimately read a poem at her funeral. Mrs. Albert died one night about 3 AM. Her death came less than a month after admission to hospice. The hospice intervention allowed the family to honor the patients wish to be at home, and helped the family address long-neglected emotional turmoil. A major issue was whether they would call their father to let him know of their mothers death. Finally, they decided he would be informed, in a brief letter, which would include a copy of the obituary and funeral program, plus an offer to call if hed like to talk. The bereavement staff from hospice continued to offer support to the family, which was welcomed by the daughter and her family. The patients son was less interested in continuing the counseling offered by hospice. This story illustrates the possibilities for growth that hospice involvement can bring to a family. If hospice had not been involved, this patients

Copyright 2006 by F. A. Davis.

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course of nal illness might well have been chaotic, with a series of emergencies, and probably two or three hospitalizations, and a possible nursing home admission for her last 2 weeks of life. Hospice provided the opportunity for her to remain in her own surroundings, for her family to emerge from the experience feeling satised that they had done well in their care for her, and for emotional hurts of long ago to begin healing.

Barriers to Accessing Hospice


For all the beauty of hospice, an almost insurmountable barrier exists for many people to access this care. Medicare hospice admission requires that a patient have 6 months or less to live. This poses a tremendous barrier because prognostication is an imperfect science and physicians tend toward optimistic prognostication. Another obstacle to hospice access is the Medicare requirement that the patient must acknowledge that he or she is dying by choosing hospice care at the expense of other life-extending treatment. Continuing certain treatments, chemotherapies, medication regimens, and interventional procedures may not be nancially possible with the current system of hospice reimbursement, but may foster quality of life at the end of life. This decision has been called the terrible choice. Forcing that terrible decision is a deterrent to hospice referral for both physicians and patients. As a result of the obstacles built into the hospice model, a new form of care is emerging. Palliative-care programs attempt to do all the things hospice does, yet they do so earlier in the course of life-threatening illness and without the requirement that the patient must give up any treatment or care options.

THE PALLIATIVE-CARE MOVEMENT


Palliative care focuses on easing suffering as the patient chooses. It is not necessary to give up more aggressive life-sustaining care in order to receive palliation. Palliation means lessening pain and symptoms without curing. Therefore, an intervention that is palliative is intended to relieve pain and other symptoms without curing underlying disease. Palliative care actively seeks to relieve discomfort and promote quality of life for patients and loved ones. The aim of the contemporary palliative-care movement is to expand beyond the limitations of the hospice movement to relieve suffering at the end of life, and to incorporate palliative measures even as aggressive life-sustaining care is still being offered. To do this, palliative services are offered through hospitals, clinics, hospices, and home-care agencies. Box 2-4 describes the goals of such palliative services.

Palliation can be dened as lessening pain and symptoms without curing.

Currently, most people living with life-threatening illness have months to years to live. Two-thirds of them will die in institutions, some receiving aggressive resuscitative care in hospitals, and some receiving only supercial

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Box 2-4

PALLIATIVE GOALS

Sustain relationships and refuse to abandon the patient. Promote independence and physical function as long as possible and as chosen by the patient. Aggressively seek to relieve symptoms and promote comfort as chosen. Provide physical, psychosocial, and spiritual support. Consider the patient within the context of family and community. Dene who is a family member and involve them as the patient chooses. Pay careful attention to spiritual and cultural viewpoints. Determine goals based on the values and choices of patient and family. Meet needs through an interdisciplinary team approach. Acknowledge and seek to relieve the burdens of family caregivers. Build a system of support within the home and community.
Source: Adapted from Scanlon (2001).

custodial care in nursing homes until the moment of death. Prognoses are notoriously difcult to determine for those with chronic organ failure: cardiac, pulmonary, hepatic, or renal. Their courses of illness are up and down and difcult to predict. Individuals living with progressive neurological disability, particularly stroke or dementia, may endure long, stretched-out periods at a low level of functioning. Cancer and AIDS, once rapidly fatal, have uncertain prognoses because of advanced therapies. All of these people need palliative care coupled with continued active treatment if it is effective. As mentioned earlier, hospices require that patients relinquish active treatment. Even in hospitals with well-developed hospice programs, hospice usually becomes involved in only a small percentage of deaths (Santa Emma, Roach, Gill, Spayde, and Taylor, 2003). In many circumstances, it is simply not reasonable to relinquish all efforts at life saving and to certify that patients are within 6 months of death. Patients often continue to focus on whatever more can be done to treat their disease and prolong their life. As symptoms and quality-of-life issues become growing concerns for people at the end of life, existing hospital, home care, and nursing home structures are often not in place to assist with parallel needs for active treatment, open communication, patient choice, comforting care, and end-of-life management. This is why palliative consulting teams, inpatient units, and transitional home-care teams are being developed. Box 2-5 identies Mainstream Medical Focus Contrasted with Palliative Focus. Palliative care should be offered throughout the course of disease and should incorporate

Copyright 2006 by F. A. Davis.

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Box 2-5

MAINSTREAM MEDICAL FOCUS CONTRASTED WITH PALLIATIVE FOCUS


PALLIATIVE FOCUS ON HUMAN PROCESS Therapies to comfort and meet individual goals Dying as opportunity for growth Open discussion if patient chooses Gathering around dying people Careful adjustment of opioids and sedatives to comfort and permit optimal function

MAINSTREAM FOCUS ON MEDICAL PROCESS Therapies to maintain physiological systems Death as defeat Silence without discussion of dying Withdrawal from dying people Avoidance of opioids and sedatives

Source: From Zerwekh (2002b).

the best of curative medicine in a process that has been called simultaneous care (Myers & Linder, 2003). Consider the case of 64-year-old Lyle. During routine health screening, he was found to have advanced prostate cancer. His uncertain prognosis was discussed with him from the beginning. Three years after surgery, his prostate-specic antigen (PSA) rose, and he was effectively treated with radiotherapy. Two years after that, his PSA increased again and he was treated with hormones to eliminate androgen production. Three years later, he developed bone lesions in his pelvis, right shoulder, and right upper arm. His pain was effectively managed with extended release morphine and nonsteroidal anti-inammatories. As a pathological fracture was treated with internal xation, Lyle realized through dialogue with the palliative-care providers that the disease was gaining the upper hand. He and his wife chose to travel while he still could; he also deepened his long-standing spiritual practice. Lyle enrolled in a succession of two clinical trials, but the tumors did not respond. His pain escalated and required adjuvant medication, as well as high doses of the morphine, continually adjusted. At that point, he chose hospice care.

As symptoms and quality-of-life issues become growing concerns for the people at the end of life, existing hospital, home-care, and nursing home structures are often not in place to assist with parallel needs for active treatment, open communication, patient choice, comforting care, and end-of-life management.

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Planting the Seeds Palliative care should be a goal in all health-care settings. In childbirth, we should focus on patient choice and comfort measures to promote a person-centered birthing experience. When young children are ill, the focus should be on parent choice and comfort measures to promote the childs well-being, not just treat a disease process. When people are living with chronic illness, we should focus on their own choices and denitions of quality, and provide comfort measures to enhance well-being. When people are aging and living with multiple illnesses, the focus should not be on disease management, but on their own choices and desire to be comfortable and live as well as possible. All our patients deserve palliation.

Palliative-Care Structure
A leader in the palliative-care movement, Dr. Joanne Lynn, has asserted that a good palliative system would continue active medical treatment with proven effectiveness while offering an individually customized plan to provide comfort, ensure continuity of care, emphasize end-of-life planning, use resources thoughtfully, and assist the person to make the best of every day (2001). It has been difcult to mobilize palliative home-care programs because little reimbursement is available. Nevertheless, hospitals are nding great advantages to developing inpatient palliative teams.

Consulting Teams When patients with life-threatening illnesses are admitted acutely ill to the hospital, they often expect their disease to be managed and their condition stabilized once again. Often, even when it becomes apparent that these goals may not be achievable, health-care providers fail to acknowledge the futility and perform aggressive measures until death occurs after the last resuscitation fails. Alternatively, such patients often are discharged to a nursing home without palliative goals in mind. Comfort and choice are neglected; routine medical practice commonly does not consider these to be priorities. But palliative teams are able to implement palliative goals for patients in these settings. Consider the circumstances of Johnnie, a 3-year-old head-injured child with no reexes who has been in the intensive care unit on a ventilator for 14 days, surviving several cardiac arrests. Physicians and family had been hopeful about aggressive measures, but now the measures are failing.

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Among family members, grief, anger, and denial prevail. Fortunately, the hospital has a palliative-care team. Following the neurologists referral, the team social worker sits down with the family and asks them What do you see happening? The family members reveal their fears that the hospital staff wants to let Johnnie die because we have no money. The social worker explains that this is not true and asks the palliative team physician to sit down with the family. After introductions he begins, Lets go over what medical treatment can and cannot do to help Johnnie. In time and after repeated explanation, they ask to have their ministers counsel. Over the next 2 days, amidst many conversations, the family makes arrangements for Johnnie to be weaned from the ventilator while at the same time being medicated to avoid agonal respirations. All of this is performed in the presence of family and clergy, praying together. Consider also the experience of Barbara, a middle-aged woman with extensive pulmonary cancer and liver metastases, admitted to the hospital for dehydration and pain management. She wants to continue to ght her disease, but her quality of life is poor due to the side effects of therapies. Not only does she not want to give up, but her oncologist believes that she may well have longer than 6 months to live. Again, the palliative-care team goes to her bedside to initiate a plan focused on comfort and a safe plan for living at home after discharge. Barbara does not want to stop aggressive treatment, but she does want to have her pain, nausea, and dyspnea controlled. She also wants the emotional support from the palliative team social worker, who has demonstrated his compassion and sensitivity to her wishes. The palliative team has helped her with end-of-life decisions, including a living will and health-care proxy. The palliative team coordinates care throughout her hospital admissions, home care, and eventual nursing home admission. As yet, there is no special reimbursement for palliative home care through insurance or government programs. Nevertheless, palliative-care consulting teams and inpatient palliative units are spreading rapidly across the country. They are saving money for hospitals by reducing the cost of care of seriously ill patients (wwww.capc.org). Remember that Medicare reimburses hospitals at a xed rate for diagnosis-related groups, for a predetermined number of days. When length of hospitalization exceeds the days allowed by Medicare for that diagnosis, reimbursement drops dramatically and the hospital begins to lose money. Palliative programs can cut costs of care at the end of life by reducing the use of expensive but futile technologies and moving the patient from high-cost intensive-care beds to less expensive beds and then to appropriate care in skilled nursing facilities or at home. In addition, palliative programs save time for the entire productivity-focused health-care team by assuming responsibility for communication and coordination with these patients and families who have such compelling needs. The regular staff members are freed from these responsibilities.

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Internet Reference Box The Center to Advance Palliative Care is located at www.capc.org. Note their description of how palliative-care programs ease burdens on staff and improve patient satisfaction and outcomes, as well as the hospital bottom line nancially.

Resistance to Addressing Suffering and Dying


The palliative-care movement continues to face resistance from the mainstream health-care community. There are two primary barriers: (1) preoccupation with aggressive life-saving interventions, and (2) fear of acknowledging suffering and using drugs to palliate. Before the 20th century, palliation was essentially all physicians and nurses could offer. In the beginning of the 21st century, however, palliation gets lost in the biomedical preoccupation with aggressive measures to investigate disease and prolong life as long as possible. Nuland has described the greatest challenge of contemporary medicine to be not primarily the welfare of the individual human being but, rather, the solution of The Riddle of his disease (1994, p. 249). Death is forbidden and we, as nurse technicians, often become the instruments of technology that insists on life at any cost. Box 2-5 contrasts this mainstream medical focus with palliative focus. Another primary reason that palliation is resisted has to do with fear and avoidance of suffering and the means to relieve it. Physicians and nurses fear their own vulnerability if they pay attention to the suffering: Many of us have spent our entire nursing career learning how not to react to suffering: a neutral face, a steady hand, no eye contact. We regard patients complaints with suspicion. We admire those who silently endure; they allow us to avoid confronting their suffering (Zerwekh, 2002a, p. 89). Opioids and sedatives also provoke fears of suppressing respiration, reducing consciousness, causing addiction, and being deceived by patients who we suspect are exaggerating their pain. Physicians may fear being investigated for over-prescribing opioids. Fear of comforting and becoming comfortable as a nurse using these medications safely is discussed extensively in Chapters 14, 15, and 16.

OPPORTUNITIES FOR CHANGE


Participation in the palliative-care movement permits us to practice our own deepest values, to live caring and extend comforting to the entire population of people who are suffering emotionally, spiritually, and physically at the end of their lives. Palliative understanding and action must be extended into all health-care settings where people are living their last days.

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CONCEPTS

IN

ACTION

Hannah Smith is a 43-year-old woman with terminal ovarian cancer, against which she has struggled for 10 years. She has received multiple aggressive interventions, including debulking surgeries, chemotherapy, and radiation therapies. She now suffers from an inoperable large bowel obstruction, massive ascites, pleural effusion, and kidney failure. Her mother and grandmother are able to provide care in her home, which she is now choosing. She asks not to return to the hospital and refuses all aggressive measures. Her physician has signed a Do Not Resuscitate order. Imagine you are the hospice nurse explaining hospice services to Ms. Smith, her husband, and her adolescent son. How would you tell them what hospice can do? What words would you use? How would her family caregivers benet? How might the different members of the hospice team be helpful?

References
Byock, I. (1997). Dying well: Peace and possibilities at the end of life. New York: Riverhead Books. Center to Advance Palliative Care (www.capc.org) Hamilton, M., & Reid, H. (1980). A hospice handbook: A new way to care for the dying. Grand Rapids, MI: William B. Erdsman. Later Referrals Do Not Allow Time. (2004). Quality of Life Matters, 5(4), 23. Lynn, J. (2001). Serving patients who may die soon and their families: The role of hospice and other services. Journal of the American Medical Association, 285(7), 925932. Marrelli, T. (1999). Hospice and palliative care handbook. St. Louis: Mosby. Meyers, F., & Linder, J. (2003). Simultaneous care: Disease treatment and palliative care throughout illness. Journal of Clinical Oncology, 21(7), 14121415. Nuland, S. B. (1994). How we die: Reections on lifes nal chapter. New York: Alfred Knopf. Omnibus Budget Reconciliation Act (OBRA) of 1990. 42 Code of Federal Regulation 418.21.

Public Law 97-248, Tax Equity and Fiscal Responsibility Act (TEFRA) of 1982, Section 122. Santa-Emma, P., Roach, R., Gill, M. A., Spayde, P., & Taylor, R. (2002) Development and implementation of an inpatient acute palliative care service. Journal of Palliative Medicine, 5(1), 93100. Saunders, C. (1976). Care of the dying (2nd ed.). London: Nursing Times. Scala-Foley, M., Caruso, J., Archer, D., & Reinhard, S. (2004). Medicares hospice benets. American Journal of Nursing, 104(9), 6667. Scanlon, C. (2001). Public policy and end-of-life care: The nurses role. In B. Ferrell & N. Coyle (Eds.), Textbook of palliative nursing (pp. 682689). New York: Oxford University Press. Stoddard, S. (1978) The hospice movement. New York: Stein and Day. Zerwekh, J. (2002a). Fearing to comfort: A grounded theory of constraints to opioid use in hospice care. Journal of Hospice and Palliative Nursing, 4(2), 8390. Zerwekh, J. (2002b). Home care of the dying. In I. Martinson, A. Widmer & C. Portillo (Eds.), Home health care nursing (2nd ed., pp. 274295). Philadelphia: WB Saunders.

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U N I T

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SUSTAINING YOURSELF AS A NURSE

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C H A P T E R

Strategies to Stay Healthy


Philosophical Reections Even when you yourself are in needand you areyou can help others and, in so doing, help yourself. He who calls forth the helping word in himself, experiences the word. He who offers support strengthens the support in himself. He who bestows comfort deepens the comfort in himself.
BUBER, 1957, P. 110

Learning Objectives 1. Explain the importance of knowing yourself in order to practice healthy caring. 2. Reect about your own feelings and experiences related to death and dying. 3. Identify sources of stress as a result of working with dying patients and their families. 4. Identify sources of stress due to problems within the work environment. 5. Apply strategies of fostering a healthy work environment. 6. Apply Maslows Hierarchy to sustaining personal well-being. 7. Apply to your own nursing practice the ve dimensions of staying healthy as described by expert hospice nurses.

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The End-of-Life Caregiving Model is rooted in strategies to stay healthy. To care for others and sustain compassion, nurses need to stay healthy. There are many ways nurses can sustain their own health, some of which this chapter explores in detail. This chapter also offers advice from expert hospice nurses about how to stay healthy and be able to reach out courageously to patients and families in the midst of their fear.

STAYING HEALTHY
If you imagine caregiving as a tree, then the root is the part of the tree below ground that holds the tree in position and draws sustenance from the soil. Effective nurses understand that in order to care for others, they must tend to the roots of the treethemselvesrst. After all, without strong, healthy roots, the tree will not grow. A study of 32 expert hospice nurses revealed ve fundamental ways that nurses tend to themselves and stay healthy so that they can effectively care for their patients (Zerwekh, 1995). Expert nurses were dened as being those having at least 5 years of experience and those to whom other nurses turned for clinical advice. They sustained themselves by: Giving and receiving Letting go of agendas Grieving Being open and clear Replenishing themselves

Giving and Receiving


The expert nurses describe receiving emotional and spiritual gifts from caregiving that are in balance with their own continual giving: I am a consultant and a learner. I have been taught about living in the present and enjoying the moments of our lives. I feel so honored to be part of these peoples lives. They have given me such a gift. When a nurse feels that she or he is only giving and no longer receiving, stress and dissatisfaction are tipping the balance. Sometimes nurses are able to renew themselves by deliberately becoming mindful of the gifts they receive through their work. Sometimes it is necessary to change the circumstances of work in order to renew the experience of receiving.

Letting Go of Agenda
Effective work alongside the dying requires letting go of predetermined care plans and idealistic hopes. This is a developmental process that takes time because it is not instinctual to many nurses who keep trying to x things in ways they think are best. When nurses stop trying to dictate how patients should behave at the end of life, it frees patients to live and die as they want

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for themselves. Nurses new to this work want control over end of life and need time to realize what is and is not possible. The nurse experts explain how they give up their desire to control: I put aside my own wants, subordinate them or gure out how to modify them. You have to have aspirations and not put yourself down when you dont reach them. When there are complicated psychosocial problems, Im not going to change them. I dont worry about them. I help people where they are emotionally. When I see that patients are doing things in ways that are not healthy, Im able to point it out to them, but it doesnt drive me crazy. There are so many challenges to our preferred care plans. You may walk into a home that is dirty and vermin-infested. You will need to let go of your goal to improve the housekeeping. You may work with a patient who believes he must suffer for his sins and therefore is noncompliant with your recommendations for controlling his symptoms. You may have a goal that a broken family is reconciled, but family members themselves reject any proposal for forgiveness and closure. We need to respect patient and family autonomy, and recognize circumstances that we can and cannot inuence. Thus, developing realistic goals and letting go of our own agendas are essential skills to sustain us in this work.

Grieving
Beyond attending funerals and memorials, the expert hospice nurses describe their insights into how to cope with enormous grief: If staff doesnt have a safe place to deal with the emotional burden of facing that level of suffering, you are going to have burnout. You have to learn how to grieve or you will be eaten up, burned out, unable to meet your clients needs, much less your own. For me, I watch sad dog movies. Nurses who are effective at the end of life must nd ways to grieve, and agencies must nd ways to assist them in this persistent need. Lamendola (1996) explains that all intense feelings, including sadness and grief, need to be acknowledged regularly and expressed. Emptying ourselves of these feelings is essential or he warns that we will become too full to give or receive. One poetic nurse proclaimed, We need to fall apart, then come together again. Out of the ashes we become powerhouses.

Being Open and Clear


Expert nurses insist that emotional openness and clarity are vital to sustaining themselves. At the end of life, patients are quickly aware of insincerity and false words:

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Its not what you do, its who you are and your openness to inte grate that into what you do. Your sincerity will show. If youre not sincere, theres very little true contact that you are going to make. Dying people are really sensitive to whether you care. Having decided that it was better to be emotionally honest in regular life just transferred over to my nursing. At the end of life, patients want to speak to someone who is truly listening and comprehending their circumstances, not someone who is pretending to listen and care. We must choose to be present emotionally with the person, not simply to nod and paraphrase their words while our mind is otherwise disengaged. When we are open and clear, we have the gift of truly coming to know another human being.

Replenishing Yourself
Expert nurses nd ways to replenish themselves. Identify those things in your life that give you pleasure and make room for them. Balancing your life will make you a better nurse. After work, nd ways to restore your energy in activities that t your personality. Perhaps you will seek renewal through silence. Perhaps you will be renewed with joyful music. Perhaps you are at peace when you go to the forest, prairie, river, or ocean. Become involved or strengthen your involvement in church, synagogue, mosque, temple, or other organizations that meet your needs. Let yourself be nurtured through your community. Rest and exercise. Surround yourself with good people. Seek out beauty. Avoid commitments beyond your capacity. Laugh. In order to stay healthy and replenish yourself, it is rst necessary to understand through self-reection what works with you and what does not.

Internet Reference Box Learn some ways to replenish yourself using these resources: www.howmuchjoy.com/links.html www.inspiredathome.com/v.1/18.htm.
WWW.

KNOWING YOURSELF
Replenishing yourself rst involves knowing what works for you and what does not, understanding your own perspectives and your own emotions. In other words, before caring for patients who are dying, you must rst know yourself.

Emotional Clarity
Self-awareness is a life-long challenge. Your ability to understand your own emotions and reactions will help you provide quality end-of-life nursing

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care. Nurses are constantly experiencing a variety of emotions and reacting in ways that may or may not be caring. For instance, one patient may have a tone of voice that you associate with someone you dislike. Because of that association, you might have trouble listening to his problems; you should be aware of your inclination to avoid him. Another patient may have a condition from which your beloved relative died and you noticed that you develop headaches whenever you care for him. Self-awareness would help you make the connection. Another example might involve a nurses distress at home. For instance, you might have had a morning argument with your teenager about going to school; you may nd yourself still too angry and distressed to listen to a patients distress. It is important to reect inwardly and to be aware of how our feelings inuence our ability to care.

Your ability to understand your own emotions and reactions will help you provide quality end-of-life nursing care.

We are all products of our own histories. Many of us are recovering from childhood emotional injuries that led to unhealthy patterns like guilt, severe self-criticism, overwork, attention-seeking, or angry behavior. For instance, some of us had mothers whose criticism was constant. Now we play a neverending message in our heads that we are not good enough. Such a past might lead to a tendency to try to prove oneself by working extra shifts, taking on extra projects, and otherwise interfering with relationships with those we love. Many have experienced adult traumas, betrayals, or losses, such as divorce or the premature death of a loved one. We may still be angry and project that anger on patients and coworkers. In short, we have all developed ways of coping with our own suffering that determine how we care for suffering in others. Some of these patterns may not be healthy for us or helpful to others. A nurse who may have always suppressed criticism from her mother may also be ineffective in handling a patient who is expressing distress over criticism from his mother. Emotional clarity requires us to come to terms with unhealthy coping mechanisms so that we can provide effective care.

Planting the Seeds Coming to terms with your own issues involves: Being curious about yourself Resolving to grow in self-awareness Looking at how your family history and life experiences have inuenced your emotions Identifying how you usually feel in a typical day Identifying your most important needs Noticing what situations and relationships make you uneasy and distressed

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Recognizing personal judgments, fears, and anger intruding upon relationships with patients Choosing to put aside these automatic feelings and reactions in order to be more effective in all relationships

FACING DEATH
We are a death-denying culture and most of us have had few encounters with death before becoming nurses. In the hospital, home, and nursing home, we focus on keeping physiological systems functioning and technological interventions running smoothly. We sometimes overlook the fact that caring for people who are dying requires paying attention to their human experiences. We must stop, listen, and look into the faces of those close to death. To do this, we must develop some comfort in facing death ourselves and exploring our own personal beliefs and fears.

We must stop, listen, and look into the faces of those close to death.

Reecting on death is a great challenge in our culture because social prohibitions keep us from talking about and thinking about death. Other cultures perceive death differently. For example, death and suffering are subjects of common reection and acceptance in Hindu culture (Kemp & Bhungalia, 2002). Traditional Hindus actively anticipate the next life. The elderly and terminally ill do not deny their dying. By contrast, among the elderly and terminally ill in America, there are often strong social prohibitions against saying anything about death. Recently, a hospice nursing supervisor reported that her 90-year-old mother refused to watch a highly recommended television program about death because her friends considered the subject morbid. Not only is discussion of death considered to be inappropriate in our society, but the mention of death also brings up strong feelings of fear, anger, and sadness. We are afraid of the unknown, angry that death unfairly intrudes upon life, and sad about our own losses. If we have been caregivers for a while, we often have feelings of chronic sorrow about all of our patients who have died. Feelings that we dont acknowledge remain hidden in the shadow (Larsen, 2002, p. 88).

Feelings that we dont acknowledge remain hidden in the shadow (Larsen, 2002, p. 88).

Acknowledging repressed feelings allows us to understand ourselves better. It allows us to let our defenses down so that we can come to know people who are dying instead of maintaining boundaries against them because of our own fear. Take time for reection by examining the questions

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Box 3-1

FEELINGS ABOUT DEATH

1. Reect about whether your family talked about death and how it was discussed or avoided when you were a child. Can your family discuss this topic today? 2. Consider your rst encounters with death. What do you remember? 3. What do you currently believe about what happens after death? 4. What feelings do you have about your own death? What would be your greatest fears? 5. What feelings do you have about the death of those you love? What would be your greatest fears? 6. What would be your own last wishes? What business would you want to complete? With whom would you want to reconcile? What rituals would you choose at the end of your life? 7. What are your greatest fears in talking to a dying person? 8. Would your family and friends be able to talk to you about your dying? Would you be able to talk to them about their dying? 9. What feelings do you have about encountering end-of-life symptoms? 10. What feelings do you have about dead bodies and doing postmortem care?

in Box 3-1, Feelings about Death. It is not until we can reect upon our own feelings about death that we can care for others encountering death. Our feelings about death have an impact on the care we can provide. For example, if all talk of death has been avoided in our family, we need to learn to talk about it deliberately. If we do not believe in an afterlife, we may be deeply troubled to work with patients who we believe face a nal termination. If we have experienced bereavement ourselves, we may have unresolved feelings that lead us to a desire to avoid future encounters with death. If we associate death with dark forces and evil spirits, we may be terried to be in the presence of death. For example, one student was assisting with post-mortem care, when suddenly, she froze in position and would neither move nor speak. The traditional belief system of her childhood culture had taught her that nonrelatives risked their souls by touching dead bodies. She had to be half-carried out of the room and referred for counseling. In order for her to provide effective end-of-life care, she needed guidance to work through her thoughts and feelings about death.

HEALTHY CARING
Knowing yourself and recognizing your feelings about death is the basis of a strong foundation for healthy caring. Healthy caring requires self-awareness

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to be able to purposefully enter into the world of a suffering person to understand his or her experience, while maintaining enough detachment to be of practical usefulness and to retain our own emotional health. We seek to feel without being overwhelmed, to care without being overcome, to participate without losing identity (Blues & Zerwekh, 1984, p. 333). This is a career-long challenge for all nurses. Martin Buber, the famed Jewish philosopher, believes that when we are compassionate toward others, our own lives are enhanced and we are comforted in our own suffering (1957). In other words, Buber assures us that we will actually become stronger, not weak and overwhelmed, as we develop this practice of compassion. The prequisites of compassion include a strengthened sense of self and greater comfort for our own hurts. The practice of compassion brings great rewards, including the joy of being able to relieve suffering and the opportunity to know the sufferer as a fellow human being. Despite these rewards, the ability to sustain such compassion ebbs and ows throughout our lives and careers. Lamendola (1996) calls this phenomenon burning brightly and burning dimly. Sometimes we are energized and feeling well so that we can fully engage in caring; other times we suffer from compassion fatigue and can barely listen to calls for caring. Nurses suffering from compassion fatigue are aware of their diminishing empathy as they suffer growing emotional distress over their continual encounters with suffering. Alternating burning dimly and burning brightly is a normal human pattern for all of us, and to avoid compassion fatigue, we need to stop and consider ways to be self-aware and care for ourselves.

STRESSORS IN END-OF-LIFE CARE


Nurses have personal stressors, patient and family stressors, and work environment stressors, all coming into play at the same time. Understanding the sources and impact of the stressors, and learning ways to combat them, can go a long way toward making you a better nurse and a happier person.

Internet Reference Box For more reading on the stressors associated with end of life nursing, refer to www.hospiceresources.net/hospicearticleabstracts/.
WWW.

Sources of Stress
Nurses working at the end of life encounter two kinds of stress: (1) stress arising directly from their work with patients and families, and (2) stress arising from within the work environment.

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Patients and Families Vachon (2001) has extensively studied the causes of stress for nurses working with dying patients and their families. Patient and family stressors include experiencing patient decline and death, lack of control, and being in the middle of family conict. When patients with whom they have long-standing relationships gradually deteriorate, nurses become stressed. We witness suffering of patients and families and may at times feel overwhelmed with feelings of sorrow. In addition, conict between stressed family members often erupts right in front of our eyes. For example, one family member might want to give adequate morphine to relieve pain of the suffering patient, while another fears addiction and withholds pain relief. The nurse is in the middle, seeking to mediate conict so that the dying person can be comforted. In addition to having limited control over dying, nurses also cannot control how other people feel about and act when dying. Patients or family members may seek more aggressive therapies than are appropriate or give up too soon. Nurses may question the wisdom or morality of decisions that are not theirs to make. We are caught between idealistic expectations of fostering a good death and the realities of how people choose to live and die. For example, some people carry hatred to their deathbed. Some choose to accept physical and emotional abuse from loved ones, as they have done through life. Others may choose to live alone and refuse help. We witness people making troubling choices at the end of life. Caring for the dying requires coping with lack of control and deliberately letting go of ones own agenda, which many nd stressful.

Organizational Sources Despite the obvious difculties of being immersed in end-of-life patient and family suffering, Vachon (2001) proclaims that organizational conicts actually cause more stress than witnessing the suffering. Nurses often experience great responsibility and high expectations to relieve suffering without the power and resources to meet those expectations, which can impose great emotional burdens. We strain to narrow the gap between idealistic goals and real possibilities. Contemporary work environments, which emphasize productivity and nances, can threaten quality practice that nurses have previously been able to provide. We desire to provide holistic care for every patient and family, yet the organization might expect us to make more visits every day. Our visits end up being too short to spend the needed time listening. We seek to offer spiritual care, yet the hospice chaplain might have a caseload so large that he cannot respond effectively to our referral for spiritual counseling. We want to serve the poor, yet the hospice cannot survive by making visits to patients without a funding source. In the early days of the hospice and palliative-care programs, nurses had generous time to respond to complex patient and family challenges. However, we are now often stretched to our limits with a growing workload.

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Lack of control may be a critical stressor at work. In some agencies, the nurses freedom to provide comforting care may be constrained by other professionals. For instance, in one agency, social work leaders insisted that they were the only profession who could intervene in psychosocial issues and that nurses could not document regarding patient or family emotional issues. As nurses, we are prepared to care for the whole person: body, mind, and spirit. Denying nurses psychosocial role reduces us to focusing on the body alone and prevents us from practicing an essential dimension of our profession. In another agency, physicians refused to write standing orders so that every change in medication dosage or route required the extended and stressful process of contacting the physician and getting a response. The nurses were unable to modify regimens readily to ensure stable control of symptoms, and patients suffered as a result.

Manifestations of Stress
Stress imposes tension and strains our coping mechanisms. Moderate stress mobilizes our personal resources. It stimulates us to activity and accomplishment. However, excessive stress causes so much distress that it can produce symptoms affecting our body, spiritual well-being, emotional state, and professional behavior. Physical symptoms include headache, appetite change, weight change, substance abuse, gastrointestinal disturbances, fatigue, sleep disturbances, shortness of breath, and palpitations. Spiritual effects include apathy, cynicism, and hopelessness. Emotional effects include anxiety, anger, sadness, depression, guilt, frustration, inadequacy, and powerlessness. We may withdraw from signicant relationships or create conict with our loved ones or colleagues. Refer to Box 3-2, Symptoms of Stress, to familiarize yourself with additional symptoms of stress. When nurses lack power, whether it be from a personal or organizational source, anger commonly results (Droppleman & Thomas, 1996). Too often, nurses direct anger inward and develop depression or risky health behaviors such as overeating. In addition, nurses sometimes become more and more hostile toward coworkers in a process called horizontal violence. This dynamic, rst observed among oppressed people in third world countries, involves attacking peers and family members rather than confronting policies and practices that keep us powerless. See Box 3-3, Defensive Organizational Behaviors.

Management of Stress
Work environments can be created to minimize stress and maximize nurse satisfaction and healthy coping (Vachon, 2001). Fast-paced agencies may be focused on survival or expansion to meet organizational goals or respond to community health needs. Leaders must nonetheless make it a priority to develop a caring culture in which nurses can thrive. Otherwise, they will function poorly or leave. Nurses must be involved in problem-solving to

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Box 3-2
PHYSICAL

SYMPTOMS OF STRESS

Headaches GI disturbances Shortness of breath Unhealthy eating SPIRITUAL Apathy Cynicism Withdrawal from faith community EMOTIONAL/SOCIAL Anxiety Anger Depression Guilt

Major weight changes Sleep problems, fatigue Palpitations Alcohol or drug abuse

Hopelessness Emptiness Inability to forgive

Powerlessness Withdrawal from others Hostility toward others Persistent frustration

improve work conditions and participate in major organizational decisions that affect patient care. Likewise, we need to be able to control our professional practice decisions and not have them seriously limited by agency policy. Nurses so empowered can work constructively with agencies and see themselves as participating in shaping their own destinies. For example, a

Box 3-3

DEFENSIVE ORGANIZATIONAL BEHAVIORS

In times of fear and uncertainty, horizontal violence manifests itself in angry, defensive organizational behaviors (Ryan & Oestreich, 1991). Cynicism deepens and organizational staff and leaders withdraw from each other, resist problem-solving, deny responsibility, backbite, blame, scapegoat, and go after those who try to make changes. The moral environment declines when people lie because they believe it is necessary to protect themselves. In contrast, consider Kriteks (2002, pp. 355356) proposed personal epitaph as she seeks to address nurses developing moral courage in the face of conicts, She was invited to cynicism daily, and she said no. . . . She cherished her personal integrity. Consider how to word a resolution for yourself.

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hospice or home-health agency aiming to reduce RNs and increase a new RN/LPN partnership model must provide for active input at the staff nurse level to develop strategies that will work. There must be meetings with small groups of staff in which active listening by supervisors eventually results in observable change. Staff ideas must be taken seriously. Without staff-level participation in change, withdrawal and sabotage are predictable defensive behaviors. Nurses must also be involved in discovering and developing ways to make the health-care organization emotionally friendly. Respect and appreciation from leaders and coworkers are essential. An afrming work environment may involve strengthening social and professional support with regular group sessions or professional buddies. This may appear expensive in the short run because professional nurse time is expensive. However, in the long run, the agency benets because nurses who feel supported by others are more likely to stay than those who feel isolated and alone in providing for their patients. In addition, meaningful, collaborative relationships predict organizational effectiveness. We solve problems together instead of alone. Nurses must have ways to tell their stories, but they often cannot do that at home. They cannot always count on loved ones to respond to such intense experiences. Any agency strategy that fosters healthy grieving will foster staff health. Nurses should be encouraged to attend wakes and funerals and to participate in agency memorials, such as monthly rituals that name every patient who died during the month. They need to share their joys and sorrows in simple ways, like recognizing birthdays and graduations and tragedy among loved ones, in ways that t the group culture. When there is cause for anger and fear, healthy responses include speaking openly about it to those we trust and emphasizing that everyone in the agency is in todays challenging health-care environment together; the us versus them mentality must be defeated at every turn. It is important to identify outside forces that are affecting the agencys ability to care. The group should be encouraged to develop common goals and group strategies with everyone at the table. As an individual staff nurse, you can reject anger to promote a healthy work environment by the following: Offering to help others on your team Refusing to participate in gossip Offering positive solutions to unit or agency problems Rejecting a role as angry martyr Being aware of your own health as well as the health of coworkers Refusing to accept abuse and making an honest effort to help others in the face of such treatment

For example, Ruth is a new nurse on an oncology unit that offers palliative chemotherapy and radiation therapy to many patients with terminal prognoses. Ruth has observed that several of the nurses on her shift spend a signicant amount of time complaining about their workload, about the nursing assistants, and about one physician in particular, who is rumored to

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be at fault in a malpractice suit she is facing. It has become clear to Ruth that her own mood and physical well-being will be affected if she becomes part of that subgroup. She decides not to contribute to the negativity and to be helpful and positive with the aides and physicians. Whenever coworkers are rude, she quietly asks them to treat her with respect before the conversation can continue. When one of the aides is publicly humiliated by loudly spoken criticism in the middle of the nurses station, Ruth is able to bring both the aide and the nurse into an ofce where the door can be closed. She offers to mediate to discover the point of view of each member of the team and resolve the conict. Howard is another example of a nurse who has chosen to manage organizational stress in a healthy, productive way. Howard has become aware of his own health and realizes the adverse effects of stress on his blood pressure and eating habits. He has organized a Saturday morning yoga practice for fellow employees. He deliberately avoids nonproductive group complaining about overwork and instead has chosen to work on a staff governance committee that is looking at ways to limit overtime demands on staff nurses.

Planting the Seeds When you nd yourself in a situation where you feel violated, take a deep breath and perhaps even a time out, then assess and take constructive action. Accept responsibility for mistakes, but look beyond to improving the system. Seek to channel your anger into patient advocacy, problem-solving at the unit level, or productive agency-wide changes. Asserting this level of constructive activity in the organization should be grounded in deliberate efforts to take care of yourself.

MASLOWS HIERARCHY APPLIED TO SUSTAINING OURSELVES


You can develop life-long habits of managing stress and self-renewal through listening to your mind and body, and practicing compassion for yourself. Imagine applying Maslows Hierarchy (see Fig. 3-1) to your own self-care. At the base of the triangle you will nd breathing, followed by nutrition, physical exercise, exercise for the mind, human community, and exercise for the spirit at the top of the triangle. Each level of the triangle will be discussed in turn.

Breathing
Breathing is necessary for life itself. Stress and worry have an impact on the way we breathe; our state of mind has a direct impact on our breathing pattern (Kahn & Saulo, 1994). When under stress, we tend to breathe rapidly and

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Exercise for the Spirit Human Community Exercise for the Mind Physical Exercise Nutrition Breathing

Figure 3-1 Maslows Hierarchy Applied to Sustaining Yourself. (Adapted from Maslow, 1970.)

shallowly, reducing oxygen levels in our blood. In contrast, slow, deep abdominal breathing increases oxygenation of cells. Deep breathing is helpful for calming and for increasing energy and mental clarity. Try practicing deep relaxation breathing by following the steps in Box 3-4. Imagine that a frightened patient in severe pain has just yelled at you for not responding immediately to her call light. First, you should breathe deeply, then respond with compassion.

Nutrition
It is said that we are what we eat. Are you eating healing foods or harmful foods? Do you follow the same healthy nutritional guidelines that you teach your patients? Healthy means lots of fruits and vegetables and not a lot of fatty meat, simple carbohydrates, and salt. Do you skip meals and then double up on fast food? Do you eat slowly and mindfully or do you inhale your meal rapidly while multitasking? Does your stomach hurt? Be mindful of the food you ingest and it will enhance your physical, emotional, and intellectual well-being. Too often we survive through a nursing shift by eating high-salt, high-fat, and rened-sugar snacks, and drinking caffeinated beverages. Examine Box 3-5, Nutrition Self Appraisal, and be aware of how you can best sustain yourself. With just a little bit of extra forethought and effort, we can make a positive impact on the care we provide by practicing the healthy eating habits we preach to patients.

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Box 3-4

DEEP RELAXATION BREATHING

Sit in a comfortable position with your back straight and your eyes closed. While you are learning this technique, rest your right hand on your abdomen and your left on your chest . . . Exhale completely through your nose, and then inhale deeply. Feel your abdomen lling with air and your right hand rising. Continue to inhale as you ll your chest with air, and note how your left hand rises as your chest expands. Inhale even more, lling your lungs and feeling your collarbone rise. Hold your breath for as long as is comfortable. Exhale in the reverse order from the way you inhaled. Release the air slowly, rst from your lungs, then from your chest as you feel the contraction in this area. Lastly, allow the air to be released from your abdomen, contracting your abdominal muscles to expel as much air as possible.
Source: From Kahn & Saulo (1994), p. 92.

Physical Exercise
Exercise maintains physical tness and has wide-ranging positive physiological effects, including heart and bone health. Exercise increases energy and relieves anxiety and depression. Exercise allows us to relax. So, why dont we do it more? Each of us has our own personal set of reasons. Nevertheless, practicing compassion for yourself includes creating an exercise plan

Box 3-5

NUTRITION SELF APPRAISAL

Evaluate the following elements in and factors related to your diet: Fresh fruit and vegetables Whole grains Fatty meat Saturated fat Simple sugars Salt Fast food Daily calories Eating slowly Skipping meals

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that ts your life. Dont aim too high. Make a plan that is achievable; plan for small successes. In addition to aerobic exercise, a growing number of people are adopting practices such as yoga, which focus on breathing and concentration with movement (Kahn & Saulo, 1994).

Exercise for the Mind


Moving up Maslows triangle, we reach exercise for the mind. Thoughts, including words and images, have power. Cognitive restructuring is a eld of psychotherapy that focuses on the power of the messages that we repeat to ourselves (Beck, 1976). It emphasizes becoming aware of negative messages, controlling the thoughts, and then planning to challenge the negative thoughts systematically with healthy afrmations. To practice cognitive restructuring, examine the words you speak to others and to yourself. During the course of a day, write down the thoughts that cycle through your mind. Examine how you persistently think about yourself and others. Some of us engage in constant self-criticism. By catching the thought and replacing it with a healthy one, you can choose to challenge an inner voice that is telling you, for example, Nothing you ever do is good enough. You can deliberately change that inner voice by silently repeating more positive messages such as, You are doing enough good. Take time for yourself. Just as words have power, so do mental images. Athletes are using visualization to create a new reality (Kahn & Saulo, 1994). This involves carefully developing mental images of what you would like to achieve. A usually quiet nurse, for example, can repeatedly visualize herself speaking out about a change that she perceives as necessary in the work environment. One day, she nds herself speaking out during a meeting. Now imagine yourself approaching a physician who believes that high morphine doses will kill her dying patient. Get a clear picture of her and her expected words and nonverbal behaviors. Then imagine yourself walking up to her with condence. Your breathing is slow and deep. Imagine your posture and your other nonverbal behavior as positive and strong. Your back is straight. Your smile is welcoming. Imagine yourself speaking assertively. Systematically develop your evidence-based argument. See yourself presenting the evidence on behalf of your client, and picture the physician who then agrees to collaborate with you on a pain-management solution.

Human Community
The extreme individualism of contemporary American society instructs us that self-reliance is the highest good. Throughout the history of humanity, however, we have needed each other to meet our basic survival needs. Even in these times of e-mail and labor-saving devices, online shopping, and reproduction without intercourse, humans cannot survive in isolation. Especially if we are caring for others, we need to develop and nurture a caring

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community to hold us up in good times and bad. Research demonstrates that emotional and physical health is enhanced wherever the bonds between people are strong (Aday, 1993). People who have strong extended families are healthier than people who live alone without a social network. People who live in communities where neighbors are actively involved in local schools, faith communities, and political groups are healthier than are those who live in isolation.

Exercise for the Spirit


Finally, consider the top of the Maslow triangle. In spiritual practice, we seek a transcendent reality beyond ourselves. We nd meaning beyond self satisfaction and beyond human relationships. We may nd renewal through the grandeur of nature or that of glorious art or music. We may worship and pray according to our tradition. Meditation is practiced by many religious traditions, and also by people outside of faith communities. Meditation seeks a connection with a transcendent reality, which may be Spirit, God, the universe, nature, or a collective human consciousness. People practicing regular meditation tend to be calmer, more focused, and at peace with life (Kahn & Saulo, 1994). They have learned to quiet themselves even when surrounded by agitating circumstances. Meditation may focus on breath, a word, a sound, or an afrming thought. See Box 3-6 for a simple meditation exercise that focuses on breathing and a single word. Meditation can be extended beyond a meditative session to the practice of mindfulness in daily life (Hanh, 1976). Mindfulness includes slowing down and focusing on breath and awareness during activities such as eating, walking, and housework. A few moments of meditation before a challenging work situation permit a nurse to respond constructively and calmly.

Box 3-6

A SIMPLE MEDITATION

Sit comfortably with your spine straight Breathe through your nose deeply and slowly Exhale slowly Continue with your attention focused entirely on the breath, in and out Watch your thoughts and consciously let them go whenever they bubble up Refocus back on your breathing You might choose to focus on a word or phrase with each inhalation. For example, on inhalation think peace and on exhalation like a river. Choose words that have the greatest meaning for you.

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CONCEPTS

IN

ACTION

A hospice nursing supervisor describes Sandy, one of her nurses, as burned out. This is the supervisors story: Yesterday I came in at 8:00 A.M., after Sandy had been on for an hour, and there were actually two patients sitting in wheelchairs at the nurses station who grabbed me and said they were desperate for pain medication. Two hospice patients in pain! One was crying. I checked with Sandy who told me, They are always complaining. They shouldnt be having that much pain! I medicated them both for breakthrough pain. Sandy is a very hard worker with 9 years of nursing experience. She arrives on the unit and never takes a break all day. She expects everyone to work hard and to do what she tells them to do. Patients and families are actually afraid to question her. She drinks coffee and consumes donuts while charting. Sandy is recently divorced; her husband continues to attend their community church, but Sandy has stopped going because she sees him there and all her friends from church seem to be comforting him with many invitations to meals and outings. Sandy tells everyone, The only thing I have left is this darn job. Why is Sandy unable to practice compassion? What symptoms of stress is Sandy experiencing? Examine Sandys experience in terms of Maslows Hierarchy Applied to Sustaining Ourselves. If the supervisor has had a long-term, good relationship with Sandy, what recommendations might she make to improve Sandys health? Explain the relationship between Sandys health and her ability to provide effective end-of-life care.

Only by caring for ourselves are we able to confront the level of fear experienced by patients and families. Only through practicing compassion for ourselves are we able to witness and respond to needs that one expert nurse described as cavernous. Rooted in self-care, we are able to reach out with courage to the broken and terried at the end of their lives. Gifted by knowing them and relieving their suffering, we become powerhouses. Such power is not practiced in isolation, however, but through working with a team. The next chapter describes how collaboration with an interdisciplinary team strengthens our ability to care.

References
Aday, L. (1993). At risk in America. San Francisco: Jossey-Bass. Beck, A. (1976). Cognitive therapy and the emotional disorders. New York: New American Library.

Blues, A., & Zerwekh, J. (1984). Hospice and palliative nursing care. Orlando, FL: Grune & Stratton. Buber, M. (1957) Pointing the way. New York: Harper & Row. Droppleman, P. G., & Thomas, S. P. (1996). Anger in nurses: Dont lose it,

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use it. American Journal of Nursing, 96(4), 2631. Hanh, T. N. (1976). The miracle of mindfulness: A manual on meditation. Boston: Beacon Press. Kahn, S., & Saulo, M. (1994). Healing yourself: A nurses guide to self care and renewal. Clifton Park, NY: Delmar. Kemp, C., & Bhungalia, S. (2002). Culture and end of life: A review of major world religions. Journal of Hospice and Palliative Nursing, 4(4), 235242. Kritek, P. (2002). Negotiating at an uneven table: Developing moral courage in resolving our conicts (2nd ed.). San Francisco: Jossey-Bass. Lamendola, F. (1996). Keeping your compassion alive. American Journal of Nursing, 96(11), 16R16T.

Larsen, L. (2002). Facing the nal mystery. First Books. (self-published). Maslow, A. H. (1970). Motivation and personality (2nd ed.). New York: Harper & Row. Nouwen, H. (1972). The wounded healer. Garden City, NY: Doubleday. Ryan, K., & Oestreich, D. (1991). Driving fear out of the workplace. San Francisco: Jossey-Bass. Vachon, M. L. S. (2001). The nurses role: The world of palliative care nursing. In B. R. Ferrell & N. Coyle (Eds.), Textbook of palliative nursing. New York: Oxford University Press. Zerwekh, J. (1995). A family caregiving model for hospice nursing. The Hospice Journal, 10(1), 2744.

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C H A P T E R

Collaborating with an Interdisciplinary Team


L ESLIE H. N ICOLL
Editor-in-Chief, The Journal of Hospice and Palliative Nursing

Philosophical Reections Far and away, the best prize that life has to offer is the chance to work hard at work worth doing.
THEODORE ROOSEVELT

Learning Objectives 1. Compare and contrast four models of teamwork, including multidisciplinary, interdisciplinary, cross-functional, and transdisciplinary. 2. Identify benets to patients and families that accrue from delivery of care by an interdisciplinary team. 3. Describe the differences between primary, secondary, and tertiary palliative care. 4. Identify the key members of the hospice interdisciplinary team and list at least three core competencies for each member. 5. Discuss external and work stressors that may inuence functioning of the interdisciplinary team. 6. Explain the importance of individual and organizational support to enhance the functioning of the team. 7. Discuss strategies that can be used to provide support to the interdisciplinary team.

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End-of-life care is provided to terminally ill and dying patients by an interdisciplinary team. Interdisciplinary caregiving is at the roots of the Endof-Life Caregiving Model. This chapter will describe the nature of teams in health care, with an emphasis on end-of-life care, and will describe team members and their roles. It will also cover strategies for helping team members to collaborate effectively and to manage team-related stress.

MODELS OF TEAMWORK
Teams are an integral component of end-of-life care and have been described as the glue that holds together the hospice approach (Beresford, 1993). The purpose of the team is to build a caring community, with the patient and family at the center. Care providers, including nurses, physicians, pharmacists, social workers, chaplains, and volunteers, come together as an integrated whole to respond to each patients needs, 24 hours a day, 7 days a week. Figure 4-1 illustrates the interdisciplinary team. The team is responsible for addressing the diverse needs of the patient and family, including pain and symptom management, psychosocial concerns, spiritual distress, and bereavement counseling for the family after the patients death. In hospice and palliative care, the team is usually dened as interdisciplinary but there are other models of teams, including multidisciplinary, cross-functional, and transdisciplinary, that need to be understood for a full appreciation of the importance of the team approach.

Figure 4-1 Interdisciplinary Team Focused on Patient and Family.

Nurse

Physician

Nursing Assistant

Family Pharmacist Patient Chaplain

Social Worker Volunteer

Physical or Occupational Therapist

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Multidisciplinary Teams
In many health-care settings, multidisciplinary teams serve as the norm for care delivery. A multidisciplinary team entails a variety of health professionals all working together on behalf of the patient. On a multidisciplinary team, individuals are known rst by their professional identity and second as a member of the team. Leadership is often hierarchical and in many cases the physician is the captain of the ship. Information is shared not in meetings but through the medical record and as a result, team members often work in relative isolation (Ajemian, 1994). Each member has a clearly dened place in the overall care of the patient, contributing to the care through his or her expertise. Goals for the patient are formulated individually by each practitioner and reect the expertise of the practitioner. The focus is not necessarily on an integrated understanding of the patient, but instead, on the separate expertise each discipline has in relation to the patient (Egan & Labyak, 2001). A pie analogy is useful to describe the multidisciplinary team. Each practitioner represents a separate piece (Crawford & Price, 2003); while each contributes to the whole pie, the quality of the whole is not necessarily greater than the sum of its parts. The lack of collaborative care-planning and goal-setting can be detrimental to the patient. The different approaches can be inconsistent and haphazard, resulting in discontinuity of care. This, in turn, is frustrating for the patient and family, and may result in poorer outcomes and diminished quality of life.

Interdisciplinary Teams
The interdisciplinary team, by contrast, has members who share information and work interdependently. The team provides expert medical and nursing care, pain management, and emotional and spiritual support expressly tailored to the patient and familys wishes and needs (Lipman, 2002). Team membership and the identity of the team supersede individual professional afliations and roles. Leadership is task dependent and tasks are dened by the patients changing situation. Again, Crawford and Price (2003) use an analogy, this time of a hand, to describe team functioning. The individual digits alone have differing abilities, functions, and dexterity but when they work together they can achieve more than the sum of the individual ngers (p. S33). Care management by an interdisciplinary team is a process, not an event (Egan & Labyak, 2001). To be effective, the team must have an ongoing, collaborative practice that incorporates shared goals, care-planning, role-blending, and shared leadership. Frequent dialogue between different team members with differing expertise and perspectives fosters continuing development and evaluation of therapeutic approaches. For instance, the chaplain shares his concern about the patients uncontrolled vomiting; the nurse speaks of the patients worries about divine judgment; the social worker notes that the primary caregiver is uncomfortable with

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bathing the patient. The plan of care evolves as they interact with each other. A high level of trust and effective interactional process is vital to the success of the team.

Cross-Functional Teams
A team concept developed in business, but not used widely in health care, is the notion of a cross-functional team. In this model, a team is assembled with an eye to creating a skill set specic to the purpose at hand. Team members are recognized as experts who are ready to move quickly and be exible to meet changing demands. The synergy created by the team is benecial to all involved (Parker, 1994). In end-of-life care, this synergy would provide support to the team as well as translate into improved processes for care for the patient and family. Successful teams may possess combinations of skills that no single individual demonstrates alone (Crawford & Price, 2003).

Successful teams may possess combinations of skills that no single individual demonstrates alone (Crawford & Price, 2003).

In a sense, a cross-functional team may be seen as an extension of the traditional interdisciplinary team. Although an interdisciplinary team does have some role-blending, in a cross-functional team this is taken one step further. Members learn how to cover for each otherperhaps not in the areas of highest specializationbut in areas of patient support and caring. They minimize each others weaknesses and maximize their strengths. A crossfunctional team provides a powerful forum for creative problem-solving, as every members contribution is genuinely solicited and respected (Crawford & Price, 2003).

Transdisciplinary Teams
At the farthest end of the continuum is the transdisciplinary team. In this model, role release occurs. Roles and responsibilities are shared and there are few seams between the members functions (Parker, 1994). To the patient, it does not matter if the practitioner is a nurse, social worker, or physician. Again, this model is not predominant in health care, but it is present in hospice. For example, Mazanec and colleagues (2002) described a transdisciplinary model of pain management. In this model, every member of the team was empowered to assess and manage a patients pain. Whether a nurse, physician, or nursing assistant, everyone was expected to screen and intervene, at a level appropriate to their expertise, to minimize a patients pain. During the implementation of the project, it was found that nursing assistants, who had frequent patient contact, often identied subtle changes in patients behaviors that were indicative of discomfort. In a traditional process for documentation, their notes would not be included with the notes of the other team members. This process was changed and

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their assessments and interventions became part of the transdisciplinary patient-care record. The Zero Acceptance of Pain (ZAP) cancer pain-assessment protocol is another example of a transdisciplinary approach to pain management (Fortner et al., 2003). This protocol was developed by cancer pain specialists, with funding for its implementation and testing provided by the Anesta Corporation. The protocol was designed for oncology practices and physicians ofces. Once again, every member of the practice, from receptionist to physician, was empowered to screen and assess a patients pain. They were given tools to assess and document pain, and protocols to intervene appropriately. Patients were taught that they could call and say, I am experiencing pain and it would be treated. The roles and identities of team members truly were transparent to the patient who made the call and needed help.

Benets of Team Processes


Although interdisciplinary teams have been the traditional name given to teams in end-of-life care, many teams may read these descriptions and realize they are functioning at a higher levelperhaps cross-functional or even transdisciplinary. Whatever the name, there are many benets of a comprehensive, collaborative team approach to end-of-life care, including: Working for common goals Pooling of expertise Having a forum for problem-solving Having opportunities for personal growth and development Being able to share burdens and offer personal support, particularly for professional self-care (von Gunten, Ferris, Portenoy, and Glajchen, 2001)

The skills of multiple disciplines are required in providing thorough endof-life care. Patients are whole persons with many dimensions. Patients need a social worker, for example, to focus on emotional and social health. They need a physician to focus on treating disease. They require a nurse to focus on treating the human response to pathology. They may want a chaplain to focus on spiritual health. Patients and families have different needs and vulnerabilities, and may express these needs to different providers. Team members bring not only their expertise, but their personalities and life experience to their patient encounters. Moreover, caring for patients at the end of life can be physically demanding and emotionally draining. Having a team with which to share these feelings is an important component of personal self-care.

LEVELS OF INTERDISCIPLINARY CARE DELIVERY


The interdisciplinary team is the vehicle for providing end-of-life care. Care provided by the team can be delivered at three levels. Von Gunten and colleagues (2001) describe Primary, Secondary, and Tertiary Model of Palliative Care Delivery.

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Primary Palliative Care


By denition, primary palliative care is provided by all health-care professionals, no matter what their setting or practice. Primary palliative care is offered by the interdisciplinary team in doctors ofces, clinics, hospitals, nursing homes, and home-health agencies. All individual practitioners are expected to have a basic competency in primary palliative or end-of-life care. The initiative of the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) to ensure that all patients are assessed for pain would be an example of primary palliative care (von Gunten et al., 2001). Ensuring that patients have been given information to make informed decisions regarding advance directives would be another example. In general, primary palliative care is provided by and is an expectation of all health-care practitioners. At this level, they are not providing care as part of an interdisciplinary team per se, although, of course, they are part of the health-care team.

Secondary Palliative Care


Specialized services, provided by an interdisciplinary team, constitute secondary palliative care. In secondary palliative care, the members of the health-care team have advanced knowledge and expertise that exceeds that of providers of primary palliative care. Practitioners provide services to patients in settings such as inpatient or outpatient hospice, or are members of palliative-care teams. Nurses who choose to become certied in hospice and palliative nursing have developed a level of expertise and knowledge that demonstrates their competency in secondary palliative care. Certication is offered through the National Board for Certication of Hospice and Palliative Nurses (NBCHPN). The credential for those who successfully meet the requirements and pass the examination is CHPN. Physicians can also be certied as palliative medicine specialists by the American Academy of Hospice and Palliative Medicine (AAHPM).s

WWW. Internet Reference Box For more information on certication in hospice nursing, visit the NBCHPN Web site at http://www.nbchpn.org/. For more information on physician certication, visit the AAHPM Web site at http://www.aahpm.org/.

Tertiary Palliative Care


Tertiary care exceeds the ability of secondary care. Practitioners work at referral centers and have expertise in difcult problems. Tertiary palliative care is generally provided in academic medical centers where specialist

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knowledge for the most complex cases is practiced, researched, and taught (von Gunten, 2002). The types of problems these patients may experience include severe pain syndromes, terminal agitation, and terminal restlessness. It should be noted that a patient may move between requiring secondary and tertiary care. For example, a patient may require a brief in-hospital stay on a tertiary-care unit because of severe pain that is not being well controlled by the current regimen. Once a new pain-treatment plan has been developed, implemented, and evaluated for its success, the patient may very well return home with care again being provided by the members of the secondary-level team.

MEMBERS OF THE HOSPICE INTERDISCIPLINARY TEAM


By regulation in the United States, the hospice interdisciplinary team must include, at a minimum, a doctor of medicine or osteopathy, a registered nurse, a social worker, and a chaplain or spiritual counselor. In addition, the hospice must employ, or have a formal agreement with, a licensed pharmacist to provide advice on ordering, storing, administering, disposing, and record-keeping of medications (Lipman, 2002). With the comprehensiveness of this role, the pharmacist is typically a full member of the interdisciplinary team (Arter & Berry, 1993; Berry, Pulliam, Caiola, and Eckel, 1981). A variety of other professionals may also be team members, including: Ethicists Specialists, such as psychiatrists, psychologists, or practitioners with expertise in pain management Therapists (occupational, physical, art, and music) Dieticians or nutritionists Bereavement counselors Important nonprofessional members of the care team include licensed practical nurses, nursing assistants, and volunteers. Their roles will be discussed more fully in a subsequent section.

Physician
The physician member of the team is responsible for the medical component of the patients care. The physician serves as a liaison between the patients primary care physicians and the hospice program staff (Lipman, 2002). Physicians working in hospice tend to come from a wide variety of backgrounds, including surgery, anesthesia, family medicine, oncology, psychiatry, and internal medicine, to name a few (Ajemian, 1994). To be effective in end-of-life care, the physician must have a broad base of clinical expertise, plus a commitment to a philosophy of care that sees the patient as a total person. Physicians are called to be healers with their whole person, and in addition to their professional competence will need the personal qualities of compassion, patience, maturity, and condence that enable this to happen

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Box 4-1

CORE PHYSICIAN COMPETENCIES FOR THE INTERDISCIPLINARY TEAM

Understands human health and disease, especially end-of-life disease processes Possesses expertise in end-of-life diagnosis and symptom control Communicates effectively Leads palliative treatment planning Helps to clarify the goals of care by afrming and listening to other team professionals Facilitates decision-making

(Swanson, 1990). The core competencies of the physician member of the interdisciplinary team are listed in Box 4-1. The physician is responsible for diagnosis of disease progression and prescription of palliative treatment. He or she maintains current palliative knowledge and enjoys ongoing communication with the rest of the team to provide care for the whole person.

Physicians are called to be healers with their whole person, and in addition to their professional competence will need the personal qualities of compassion, patience, maturity, and condence that enable this to happen (Swanson, 1990).

Registered Nurse
Many of the qualities that draw people into nursingintimacy, equality, nurturing, and conscienceare the same qualities that draw nurses into end-oflife care (Fagin & Diers, 1983). The registered nurse is the team member who will spend the most time with the patient and family, at home or in an inpatient setting. This gives the registered nurse the unique opportunity to know the patient intimately, even when there may be only days left in the patients life. The registered nurse has responsibility for the patients physical and psychosocial comfort, as well as for care coordination. It is important for the nurse to have excellent skills in end-stage physical assessment, disease progression, and pain and symptom management. The nurse has an important role in teaching the patient and family about their role in caregiving, including medication administration, equipment use, skin care, and management of daily living. Like the physician, the nurse must have a commitment to listening and counseling the whole person and family. The registered nurse will have responsibility for supervising the other nursing-related personnel on the team, including licensed practical nurses, certied nursing assistants, and home-health aides (Egan & Labyak, 2001). Day-to-day coordination of

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Box 4-2

CORE PROFESSIONAL NURSE COMPETENCIES FOR THE INTERDISCIPLINARY TEAM

Performs skilled psychosocial and physiological assessments Communicates patient needs and status to the team Supports patient and family participation in decision-making Advocates for the patient and family Organizes the patients environment to minimize loss of control Plans and implements palliative nursing interventions in concert with other disciplines Educates patient and family regarding course of disease and interventions Provides psychosocial support

care and maintaining communication among the team members are important responsibilities. The nurse must also oversee the plan of care and evaluate its effectiveness in meeting patient goals. Core competencies for the registered nurse are listed in Box 4-2.

Social Worker
A social worker with expertise in end-of-life care is a central member of the team, but as von Gunten and colleagues (2001) note, the discipline of social work is often poorly understood. Social workers have extensive knowledge and expertise in psychology and family systems. Their goal is to help the patient and family deal with the personal and social problems of illness, disability, and impending death. Social work interventions typically involve one of two types: instrumental services, such as referral to needed community services; or emotional support, including individual counseling, family counseling, and after death bereavement counseling. Many professionals are familiar with the social workers instrumental interventions but are less knowledgeable about their expertise in counseling. Unfortunately, for social workers, counseling is often the work that they often nd more compelling and important, especially in end-of-life care. Thus, it is particularly important for social workers to clarify their role on the interdisciplinary team (Ajemian, 1994). Core competencies for social workers are listed in Box 4-3.

Spiritual Counselor
The spiritual component of care is signicant in end-of-life care. The spiritual care professional may have a variety of titles, among them chaplain, clergy person, spiritual counselor, pastoral counselor, or pastoral care worker. The

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Box 4-3

CORE SOCIAL WORKER COMPETENCIES FOR THE INTERDISCIPLINARY TEAM

Assesses the patient and family reaction to the illness and the implication of the illness for their lives Determines physical and social resources Provides needed psychosocial information Mobilizes needed health and community resources Promotes effective communication with the patient/family unit Fosters insight and adjustment to social consequences of illness and loss Assists in practical planning Helps with nancial challenges and insurance benets Offers counseling and emotional support Provides bereavement services for complicated grief after the patients death
Source: Adapted from von Gunten, Ferris, Portenoy, and Glajchen (2001).

spiritual care professional on the hospice interdisciplinary team may be grounded in a strong religious tradition, but does not evangelize and comes to the dying person in an open way that is nondenominational, nonsectarian, and all-inclusive (Lipman, 2002). Care may be provided by the spiritual care professional in coordination with the patients own clergy, if such a person is a part of the patients life. The goal of hospice spiritual care is to support the patient and the family. The approach is nonjudgmental and focuses on healing, forgiveness, and acceptance. Spiritual interventions are many and varied, and can include prayer, rites, rituals, singing, and assistance in planning and performing funerals. The core competencies for the spiritual care professional are listed in Box 4-4.

Box 4-4

CORE CHAPLAIN COMPETENCIES FOR THE INTERDISCIPLINARY TEAM

Assesses spiritual distress and opportunities for spiritual growth Provides support and counseling to the patient/family Leads or promotes supporting rituals, as appropriate Promotes linkages to the faith community

Source: Adapted from von Gunten, Ferris, Portenoy, and Glajchen (2001).

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Pharmacist
The pharmacist plays a key function on the interdisciplinary team, with activities that are a blend of both traditional and expanded roles. Responsibilities fall in the areas of clinical practice, administration, and support to other team members. Larger hospices may have their own pharmacist; smaller hospices will have contracts with consulting pharmacists. Pain and symptom management are always key goals of pharmacist care. The pharmacist maintains medication proles and monitors all medication use, both prescription and nonprescription, for safety and effectiveness. He or she provides medications to patients within a time frame that ensures continuous symptom control and avoids the need for emergency medical services (Lipman, 2002). Pharmacists also work to provide medications in nonstandard forms and dosages to meet specialized patient needs. Pharmacists have a role in educating other team members about medication therapy, including dosage forms, routes of admission, costs, and availability. They can provide advice to the team about the potential for toxicity from and interactions with dietary supplements and alternative and complementary therapies. The scope of practice for pharmacists recognizes their authority and responsibility. They must meet the same standards as other providers for quality and continuity of patient care. They must demonstrate requisite knowledge and skills and must maintain their knowledge through ongoing education and specialty residencies. Core competencies for hospice pharmacists are listed in Box 4-5.

Box 4-5

CORE PHARMACIST COMPETENCIES FOR THE INTERDISCIPLINARY TEAM

Assesses the appropriateness of medication orders Ensures the timely provision of effective medications for symptom control Counsels and educates the hospice team about medication therapy Ensures that patients and caregivers understand and follow the directions provided with the medications Provides efcient mechanisms for extemporaneous compounding of nonstandard dosage forms Addresses nancial concerns Ensures safe and legal disposal of all medications after death Establishes and maintains effective communication with regulatory and licensing agencies
Source: Adapted from von Gunten, Ferris, Portenoy, and Glajchen (2001).

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Other Team Members


As previously noted, there are many other workers who may be called to action as part of the interdisciplinary team, depending on the patients and familys needs and situation. Certied Nursing Assistant/Home-Health Aide These team members provide basic physical and functional care where there is a need, and they also offer family support. They can provide assistance with activities of daily living, such as bathing, grooming, skin care, mouth care, and positioning. They are usually selected from those with extensive training and experience in home health, skilled nursing facilities, and hospitals. Homemaker/Companion In contrast to the certied nursing assistant, these team members do not provide direct hands-on care. The homemaker can assist with light housekeeping, meal planning and preparation, laundry, shopping, and companionship. For many elderly patients who live alone, a homemaker is the member of the team that allows them to remain independent in their home until their death. Ethicist End of life is a difcult time, fraught with discussions and decisions that must be made in the context of a terminal illness. We would all like to believe in a good death and family units that are functional, articulate, cohesive, and able to adapt to changing situations (Fisher, 2003). Unfortunately, that is not always the case and there are times when professional intervention is required to help family members have a meaningful discussion and make difcult decisions. Ethics consultation may be the required forum for resolving these differences (Dalinis, 2004; Hayes, 2004). Larger hospices contract with ethicists to consult about ethical dilemmas at the end of life. Often, an ethics committee meeting is convened to explore ethical decision-making. Therapists A variety of therapists, including physical, occupational, art, and music, may be called on to share their expertise. A physical therapist can help a patient maintain a realistic level of activity in light of diminishing muscle strength. Interventions such as massage and range-of-motion exercises can improve circulation and help prevent contractures. An occupational therapist can also assist the patient to maintain an independent level of function through adaptive equipment selection and use. Finding a balance

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between the medical milieu and play/leisure is also an important role of the occupational therapist (Ajemian, 1994). Therapists in music and art can provide expressive languages that may be necessary alternatives for the patient at a time of need.

Internet Reference Box The Journey Home: Stories from Hospice was a production by KUED-TV in Salt Lake City, Utah. This Web site features commentary from different members of the hospice interdisciplinary team. Read, in their own words, what it means to be a member of the team: http://www.kued.org/ productions/journey/team/.
WWW.

Volunteers
Volunteers fill a very important position in end-of-life care. Since the beginnings of modern hospice in the United States, volunteers have played a crucial role in providing a wide variety of services, from direct care to companionship, to behind-the-scenes administrative work in hospice program ofces. Almost 90% of California hospices surveyed provide bereavement support at no charge to the bereaved; much of this support is offered by volunteers (Foliart, Clausen, and Siljestrom, 2001). In many communities, the delivery of end-of-life care has changed over time. Many of the hospice programs that exist today began as all-volunteer programs. They have evolved to become professional organizations with a strong volunteer component (Steinhauser, Maddox, Person, and Tulsky, 2000). Within this context, the role of the volunteer becomes even more important. As Ajemian (1994) notes, There is often a major gulf between the professional world of the institution or healthcare program and the community it serves. Volunteers bridge this gulf, bringing a special dimension of community support to the program and reminding healthcare professionals of the particular needs of that community (p. 20). Ideally, volunteers come from the neighborhoods and communities they serve. Thus, a Latino volunteer may be able to relate to a patient from the same community and interpret her needs to the interdisciplinary team. Likewise, a senior volunteer who has lived all her life on a farm is able to make special connections and explain the values and needs of her neighbors.

There is often a major gulf between the professional world of the institution or healthcare program and the community it serves. Volunteers bridge this gulf, bringing a special dimension of community support to the program and reminding healthcare professionals of the particular needs of that community (Ajemian, 1994, p. 20).

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Who serves as a volunteer? Volunteers come from all areas of the community and have diverse backgrounds. Many nurses begin their work in end-of-life care as volunteers and many volunteers come to hospice through personal experience with bereavement (Gaydos, 2004; Payne, 2001). Volunteers are men and women of all ages and walks of life, even teens can be trained as junior hospice volunteers (Letizia, Zerby, Hammer, and Tinnon, 2000). Some of the most compelling stories of hospice volunteers come from prisons. There is a growing movement in this country to develop hospice programs within prisons (Craig & Craig, 1999) to serve the needs of prisoners who die while serving their sentence. For instance, in the Louisiana State Penitentiary in Angola, 85% of the 5108 inmates are expected to die at the prison (Evans, Herzog, and Tillman, 2002). Because of statistics like this, the California Medical Facility in Vacaville has an active inmate hospice volunteer program with more than 50 trained participants (Linder, Knauf, Enders, and Meyers, 2002). The volunteers perform many duties, including sitting vigil with actively dying inmates and providing bereavement services to other inmates, staff, and members of the free community.

Internet Reference Box Learn more about the prison hospice program at the National Prison Hospice Association Web site: http://www.npha.org/index.html.
WWW.

All hospice volunteers undergo some form of training. Typically, a volunteer orientation session lasts 24 to 36 hours and is held over several weeks. The curriculum covers topics such as the physical, psychological, emotional, nancial, spiritual, and social concerns of the patient and family. Training is provided by professionals and by experienced hospice personnel. Once the training program is complete, the volunteer is assigned to a role according to personal interest and hospice need. Most opt to work directly with the dying patients and families, but many take on other responsibilities, including providing administrative support, participating in fundraising, or serving as consultants on public relations and community education.

Planting the Seeds Consider contacting a local hospice to learn more about its volunteer program. This is often an ideal introduction to the world of hospice and palliative care. You will learn about both physical and emotional support for dying people and their families. Whether you ever choose to practice as a hospice or palliative-care nurse, you will nd that your new skills will be

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relevant to most areas of nursing practice. You will deepen your ability to care for the whole family and individuals who are experiencing loss and physical, as well as emotional, suffering.

TEAM WORK AND TEAM SUPPORT: PUTTING THE PIECES TOGETHER


Successful teams require a high level of commitment from the members, development of trust, and openness to communication and problem-solving. Twelve characteristics of effective teams are presented in Box 4-6. For instance, consider the impact of an interdependent team that works as an organic whole. The teams problem has been that Frank Chen will not take his oral morphine around-the-clock as ordered. He waits until the pain is really extreme. The total picture that explains his nonadherence gradually emerges as the volunteer comes to understand his Chinese family background, the chaplain learns about his religious beliefs, and the social worker uncovers his stoical values through expert interviewing. Then, the nurse proposes incorporating traditional Chinese healing methods and the physician changes the

Box 4-6

CHARACTERISTICS OF EFFECTIVE TEAMS

1. A team is organic, a whole that is greater than the sum of the individual component players. 2. A team is interdependent, all members succeeding together or failing together. 3. A team is stimulating, and spurs individual members to greater achievement. 4. A team is fun, with members enjoying a sense of belonging and camaraderie. 5. A team is civilized, structured, with members submerging their individual aspirations in a larger objective, as they learn to share and interact. 6. Teams demand a certain conformity, but not uniformity. 7. Team members must share their vulnerabilities as well as their strengths. 8. Difcult conversations are best conducted face-to-face. 9. Condent teams allow exible professional roles. 10. Difcult decisions need to be shared. 11. Personal exchange can lead to professional growth. 12. Formal review improves future performance.
Source: Adapted from Ajemian (1994).

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prescriptions to an opioid that is long-acting and need be taken only once daily. The wisdom of the whole is greater than the sum of its parts. Many people have described caring for those at the end of their life as a privilege. But at the same time, the work can be emotionally draining and extract a toll from the individual. This is also true for the interdisciplinary team, which may face losses on an almost daily basis. Therefore, it is essential that the team have a process in place to provide for support of its members. Without this, the team is doomed to functional problems. The next section describes team stressors and support mechanisms.

Stressors for Teams


In the previous chapter, individual stressors were discussed in depth. Individuals can bring those same stressors to their team membership, which in turn, can cause problems for team functioning. There are also stressors that are unique to the team experience and arise as part of a group of people coming together to share common goals (Cairns, Thompson, and Wainwright, 2003). Some of these team-specic stressors include experiences when: Team members display a lack of trust, support, or respect for each other. The members are unclear about roles. This may include specialized skills and abilities, unique strengths, and overlap between roles. Team members have unrealistic expectations of one another. The members have conicting beliefs or values about teamwork. Members work in isolation or with minimal communication. This can be particularly problematic for someone who has the mindset to work in a multidisciplinary team model but needs to change and adapt to a more interdisciplinary focus. External stressors in the work environment can also affect team function. Important stressors to consider in this realm include: Inadequate resources to meet needs, including human, nancial, and administrative Unrealistic expectations, especially around workload and schedules Conicting beliefs about patient care and decision-making Poor communication at all levels of the organization Perceived lack of appreciation

Providing Support
Support comes from many levels, including the individual team members and the larger organizational structure. The latter is very important and can make a true difference in the long run. Organizational leaders must take a very broad view of support and provide it to their teams at every opportunity.

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Box 4-7

SUPPORT PROGRAM PRINCIPLES

1. Professionals, volunteers, and others who work with dying patients and their families, before death and during bereavement, require support to ensure that both their health and a high quality of care are maintained. 2. Primary responsibility for self-care lies with individual team members, with support from the organization. 3. Support programs must address the needs of the team, while being sensitive to the needs of the individual. 4. Support programs must be valued, encouraged, formalized, and funded by the organization. 5. Support must be embedded in an organizational culture that acknowledges the impact of working with death and bereavement, and that encourages open communication, shared decision-making, and risk taking. 6. An organizations commitment to support of health-care providers should be equivalent to its commitment to patients and families. 7. Support programs must be comprehensive, addressing various sources of stress and offering a continuum of strategies moving from prevention through crisis intervention, treatment, and rehabilitation.
Source: From Cairns, Thompson, and Wainwright (2003).

Box 4-7 identies Support Program Principles. Likewise, it is important to realize that no single approach is likely to address everyones needs and that peoples needs change depending on the situation they are experiencing. For instance, an agency-wide exercise program will be supportive to some people and not others. Chapter 3 examines strategies for staying healthy within the context of organizational challenges. Jones (2003) describes the practice of clinical supervision in the United Kingdom. With a trusted supervisor or supportive colleague, palliative care team members are able to examine different ways to help challenging patients and discuss troubling emotional and moral reactions to nursing situations. In sharp contrast to practice that is isolated and nonreective, they ponder together the struggles of working at the end of life. Other approaches for providing team support may include social events, educational workshops, and team involvement in problem-solving and decision-making. Activities may be planned or spontaneous and formal or informal. It is probably wise for some members of the team to engage in some activities that are specic to their discipline; for nurses, this may be attending continuing education conferences such as those sponsored by the

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Hospice and Palliative Nurses Association (HPNA). Interdisciplinary activities are also important, however, and should not be ignored. Many hospices organize periodic memorials in which the entire team gathers to grieve recent deaths. Memorials may include music, candle lighting, solemn readings, and acknowledgment of each patient who has died. Taking time to honor the members of the team is also important. It is vital to recognize celebrations, plan transition rituals, and provide opportunities for renewal. It is important to remember birthdays, weddings, births, adoptions, and other life transitions.

Internet Reference Box At the highest level, hospice and palliative care professional associations model interdisciplinary teamwork with both individual conferences as well as jointly sponsored conferences among organizations. You can learn more about all of these activities at the following Web sites: HPNA: www.hpna.org American Academy of Hospice and Palliative Medicine (AAHPM): www.aahpm.org The National Hospice and Palliative Care Organization (NHPCO): www.nhpco.org.
WWW.

To be effective, support programs must address the full range of activities of the team. Ongoing education and training are important for skill development and maintaining a high level of knowledge and expertise. Health-care professionals have a commitment to keep abreast of new knowledge, research, and innovations in their disciplines. Communication is vital. Most interdisciplinary teams have regularly scheduled meetings, but other mechanisms for ongoing communication should also be explored. E-mail listservs among team members might be an option. If an agency does not have e-mail capabilities, broadcast voice mail might be possible. A newsletter or dedicated message board might be another way to keep communication owing freely between meetings.

Taking time to honor the members of the team is also important. We should recognize celebrations, plan transition rituals, and provide opportunities for renewal.

Team-building should not be ignored. Like a marriage, having a successful team takes commitment and time. It is helpful for team members to engage in those activities that help to build team cohesiveness and understanding. Examples include a retreat to explore the team mission, vision, and goals. Participation in activities like a ropes course may challenge the team in new and different ways.

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CONCEPTS

IN

ACTION

At the local hospice, the volunteer coordinator and the director of nursing had planned a day-long retreat for the members of the agency, including nurses, physicians, the hospice pharmacist, social workers, volunteers, and other members of the program. Because time was short to plan the retreat, the coordinator and director had met with only a few people to get ideas for the day. Still, they were excited about the program and thought it would be a good opportunity for the staff to take a break and nd some time for renewal. They planned a variety of activities, including continuing education sessions on pain and symptom management; a Native American leading a drumming session; and a humor consultant speaking on Bringing Joy Into the Workplace. The program would be offered to staff at no charge, but it was scheduled for a Saturday. If staff wanted to be paid for their time, they had to take it as a vacation day. In the days before the program, the planners received several angry e-mail messages. Some people complained about the program. One nurse wrote, I am sick of pain management. Thats all we ever hear. Another wrote, Whats with the drumming? That is tacky. A volunteer commented, I think a discussion of humor is completely unprofessional in the context of working with terminally ill and dying patients. There were also widespread complaints about the need to use vacation time to attend the conference and many staff members were threatening a boycott of the whole day. The coordinator and volunteer met over coffee to discuss what had gone wrong in their planning. As they looked at each other, they said in unison, We were only trying to do something nice for the staff. Cant they appreciate our efforts? If you were a staff member, would you appreciate their efforts? What could they have done differently to plan the day? What do you think of the mix of topics on the agenda for the retreat? What is the level of organizational commitment to team support? In the days before the event, should the coordinator and director try to do anything to put out the res that have arisen? List their possible options with pros and cons of each. What would you choose to do? What lessons can be learned from this for the future?

References
Ajemian, I. (1994). The interdisciplinary team. In D. Doyle, G. W. Hanks & N. Macdonald (Eds.), Oxford textbook of palliative care (pp. 1728). New York: Oxford University Press.

Arter, S., & Berry, J. I. (1993). The provision of pharmaceutical care to hospice patients: Results of the National Hospice Pharmacist Survey. Journal of Pharmaceutical Care, Pain and Symptom Control, 1(1), 2542.

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Beresford, L. (1993). The hospice handbook: A complete guide. Boston: Little, Brown. Berry, J. I., Pulliam, C. C., Caiola, S. M., & Eckel, F. M. (1981). Pharmaceutical services in hospices. American Journal of Hospital Pharmacy, 38(7), 10101014. Cairns, M., Thompson, M., & Wainwright, W. (2003). Transitions in dying and bereavement. Baltimore: Health Professions Press. Craig, E. L., & Craig, R. E. (1999). Prison hospice: An unlikely success. American Journal of Hospice & Palliative Care, 16(6), 725729. Crawford, G. B., & Price, S. D. (2003). Team working: palliative care as a model of interdisciplinary practice. Medical Journal of Australia, 179(Suppl 6), S32S34. Dalinis, P. (2004). Bioethics consultations. Journal of Hospice and Palliative Nursing, 6(2), 117122. Egan, K. A., & Labyak, M. J. (2001). Hospice care: A model for quality end-of-life care. In B. R. Ferrell & N. Coyle (Eds.), Textbook of palliative nursing (pp. 726). New York: Oxford University Press. Evans, C., Herzog, R., & Tillman, T. (2002). The Louisiana State Penitentiary: Angola prison hospice. Journal of Palliative Medicine, 5(4), 553558. Fagin, C., & Diers, D. (1983). Nursing as metaphor. New England Journal of Medicine, 309(2), 116117. Fisher, C. (2003). The invisible dimension: Abuse in palliative care families. Journal of Palliative Medicine, 6(2), 257264. Foliart, D. E., Clausen, M., & Siljestrom, C. (2001). Bereavement practices among California hospices: Results of a statewide survey. Death Studies, 25(5), 461467. Fortner, B. V., Okon, T. A., Ashley, J., Kepler, G., Chavez, J., Tauer, K., et al. (2003). The zero acceptance of pain (ZAP) quality improvement project: Evaluation of pain severity, pain interference, global quality of life, and pain-related costs. Journal of Pain Symptom Management, 25(4), 334343. Gaydos, H. L. B. (2004). The living end: Life journeys of hospice nurses. Journal of Hospice and Palliative Nursing, 6(1), 1726.

Hayes, C. (2004). Ethics in end-of-life care. Journal of Hospice and Palliative Nursing, 6(1), 3645. Jones, A. (2003). Clinical supervision in promoting a balanced delivery of palliative nursing care. Journal of Hospice and Palliative Nursing, 5(3), 168175. Letizia, M., Zerby, B., Hammer, K., & Tinnon, W. (2000). The development of a hospice junior volunteer program. American Journal of Hospice and Palliative Care, 17(6), 385388. Linder, J. F., Knauf, K., Enders, S. R., & Meyers, F. J. (2002). Prison hospice and pastoral care services in California. Journal of Palliative Medicine, 5(6), 903908. Lipman, A. (2002). ASHP statement on the pharmacists role in hospice and palliative care. American Journal of Health-System Pharmacy, 59(18), 17701773. Mazanec, P., Bartel, J., Buras, D., Fessler, P., Hudson, J., Jacoby, M., et al. (2002). Transdisciplinary pain management: A holistic approach. Journal of Hospice and Palliative Nursing, 4(4), 228234. Parker, G. M. (1994). Cross-functional teams: Working with allies, enemies and other strangers. San Francisco: JosseyBass. Payne, S. (2001). The role of volunteers in hospice bereavement support in New Zealand. Palliative Medicine, 15(2), 107115. Steinhauser, K. E., Maddox, G. L., Person, J. L., & Tulsky, J. A. (2000). The evolution of volunteerism and professional staff within hospice care in North Carolina. Hospice Journal, 15(1), 3551. Swanson, R. W. (1990). Role of the family physician in treatment of cancer. Canadian Family Physician, 36, 389. von Gunten, C. F. (2002). Secondary and tertiary palliative care in U.S. hospitals. Journal of the American Medical Association, 287(7), 875881. von Gunten, C., Ferris, F., Portenoy, R., & Glajchen, M. (Eds.). (2001). CAPC manual: How to establish a palliative care program. New York: Center to Advance Palliative Care.

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U N IT

TH R E E

REACHING OUT AND CONNECTING

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C H A P T E R

Understanding the Dying Experience


I NGE K LIMKIEWICZ
AND J OYCE

V. Z ERWEKH

Philosophical Reections A man may by custom fortify himself against pain, shame, and suchlike accidents; but as to death, we can experience it but once, and all are apprentices when we come to it.
MICHEL DE MONTAIGNE, ESSAYS, 15801588

Learning Objectives 1. 2. 3. 4. 5. 6. Identify ve different categories of awareness of dying. Identify the types of small deaths that people experience at the end of life. Explore the meaning of suffering at the end of life. Explain how dying can be considered the nal stage of growth. Give examples of near-death experiences. Describe interventions for the relief of four kinds of emotional distress commonly experienced at the end of life: depression, anxiety, anger, and powerlessness.

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In order to develop relationships with dying patients, we must understand how dying changes living. In the family caregiving model, the trunk of the tree represents the process of developing connections or relationships with dying people. Connecting requires that the nurse develop a fundamental understanding of the human experience of dying. This chapter examines dying when it begins, personal awareness of dying, dying as a nal stage of growth, and the experience of small deaths as death draws near. Then the chapter explores suffering at the end of life and some ways to alleviate selected kinds of psychological distress. Finally, the conclusion explores near-death experiences.

A TERMINAL PROGNOSIS
Once they are identied as terminal, patients live in a world apart from mainstream society. Their terminal status sets them apart from healthy and ill people alike. When an illness is identied as serious but not terminal, treatments exist. Regardless of how long the treatment takes, how uncomfortable it is, or how much it may change life goals and expectations, the patient with a nonterminal but serious disease still makes plans to celebrate another birthday, attend another wedding, and watch another sunset. But when people come to understand their conditions as terminal, the picture changes dramatically. They begin to live with a stopwatch, counting the moments remaining before death. Dying is that ambiguous state of being during which both patient and family anticipate and await death. It is a period of waiting for a terminal event that will mark the beginning of a new life for the survivors, and the absolute end of mortal life for the patient. To quote the late Isaac Asimov, Life is pleasant. Death is peaceful. Its the transition thats troublesome.

When people come to understand their condition as terminal, the picture changes dramatically. They begin to live with a stopwatch, counting the moments remaining before death.

When Does Dying Begin?


Philosophers and poets (Box 5-1) have said that dying begins at the moment of birth. Practically, however, the nal pathway at the end of life can be sudden and without warning, such as with a fatal heart attack or car crash. In such a case, there may be only seconds or minutes of dying before death occurs. Commonly today, there is a long period of chronic illness that eventually threatens life. But it is often difcult to discern when that serious illness can no longer be medically managed and the person is facing the end of life. Examples include chronic respiratory disease, cardiac failure, renal failure, and many neurological diseases. Finally, there are illnesses that have a clear downhill course despite the best medical interventions. At a certain point, the

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Box 5-1

PHILOSOPHERS ON DEATH

The whole of life is nothing but a journey to death. Seneca, 64 A.D. Life follows upon death. Death is the beginning of life. Who knows when the end is reached? Chuang-Tsze, 400 B.C. All the time you live, you steal it from death; it is at her charge. Montaigne, 1580 All esh weareth out like a garment. For the covenant from the beginning is that thou shalt die the death. Ben Sira, 190 B.C. The rst breath is the beginning of death. Thomas Fuller, 1732 Death borders upon our birth, and our cradle stands in the grave. Bishop Joseph Hall, 1608
Source: Stevenson (1965).

prognosis will be terminal despite the best resuscitative interventions. Examples are cancer with multiple metastases and end-stage neurological disease, such as Alzheimers or Parkinsons, in which the person is immobilized and infections have developed. Although it is true that everyone must die, there is a moment when mortality becomes personal. The limitations of life hit home for the individual. Kalish (1981) identies both the objective and subjective elements of dying. Objectively, dying begins when trained personnel have sufcient information to make an informed diagnosis and prognosis. Subjectively, it begins when people acknowledge their own impending death, with or without medical conrmation. The two do not necessarily occur at the same time. For example, dying individuals may continue to hold out hope or deny impending death long after medical prognosis clearly indicates that death is imminent. Test and biopsy results may be withheld from a terminal patient due to advanced age, cultural considerations, or mental state. Consider those suffering from senile dementia, cerebrovascular accident, or brain metastasis. In these cases, it is often family members who are ultimately given the physicians prognosis, and must make life-determining decisions on the patients behalf. In such cases, the patient has no subjective awareness of dying. On the other hand, the patient may know subjectively that he or she is dying before tests and health-care professionals conrm it. Many people know their bodies and are attuned to the internal messages they receive. The trip to the physicians ofce may be more for conrmation than consultation. Did the dying process begin when the patient scheduled the visit to the physician, or when the physician revealed the test results to the patient? Although the beginning of the dying interval may be ambivalent, physiological changes begin to

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manifest one-by-one. For instance, rst there might be changes in bowel patterns, difculties with digestion, tiredness, and weight loss. Then the side effects of treatment and unrelenting disease progression further impair physiological functioning. Everyday living becomes harder and harder to manage.

Awareness of Dying
Glaser and Strauss (1967) describe types of awareness of dying. In closed awareness, the patient is unaware of impending death while the staff and/or family engage in tactics to avoid disclosure. This occurs when the patient does not recognize the signs, the physician avoids the subject, the family guards the secret, and the entire staff keeps the conversation focused on a supercial level. Closed awareness prevents any choice or end-of-life planning for the patient and makes reconciliation with friends and family impossible. In many traditional cultures, speaking of death is believed to do more harm than good. For instance, Greek physicians and nurses fear that revealing the truth to patients will provoke unhealthy emotions (Georgaki, Kalaidopoulou, Liarmakopoulos, and Mystakidou, 2002). Only 11% of Greek physicians disclose the diagnosis of cancer to all their patients and 66% of nurses nd it difcult to speak openly to a patient about death. In suspicion awareness, the patient suspects his prognosis but the family and staff do not conrm this, and continue to use tactics to avoid the subject. This occurs because of fear that troubling emotions will be expressed. If the situation is not acknowledged, feelings are avoided. In mutual pretense, all parties are aware of dying but agree to act as if the person is going to live. Neither wants to disturb the other with discomforting news. Tact and silence dominate the environment. Rituals focusing on wellness continue and discussion is about safe subjects. If a nurse or family member witnesses the person crying, he or she will avoid calling attention to the situation and attempt to change the subject. Many cultures, particularly nonWestern cultures, place a high value on avoiding the awareness that death is coming closer. In 1886, Leo Tolstoy (1981, pp. 102103) wrote about the lies required to maintain mutual pretense: Ivan Ilyich suffered most of all from the lie, the lie which, for some reason, everyone accepted: that he was not dying but simply ill, and that if he stayed calm and underwent treatment he could expect good results. Yet he knew that regardless of what was done, all he could expect was more agonizing suffering and death. And he was tortured by this lie, tortured by the fact that they refused to acknowledge what he and everyone else knew, that they wanted to lie about his horrible condition and to force him to become a party to that lie. This lie, a lie perpetrated on the eve of his death, a lie that was bound to degrade the awesome, solemn act of his dying to the level of their social calls. . . . He saw that no one pitied him because no one even cared to understand his situation.

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Finally, open awareness occurs when both staff/family and patient acknowledge dying. The patient then has the opportunity to bring closure to his life, say good-bye, say, Im sorry, and state nal wishes. Open awareness invites closure not only for the patient, but for loved ones as well. One challenge to acknowledging death openly is that the terminal nature of many illnesses has changed and continues to change. Some diseases, once terminal, are now chronic, and innovative treatments that may postpone death are developed every day. Thus, patients may be told that their disease is life threatening, but then nd that there is still another therapy. The resulting uncertainty yields an ambiguous situation for both patient and family, and postpones closure. The ambiguity often changes the focus from completing tasks at end of life to managing symptoms and anticipating invasive therapies. Rather than discussing dying wishes, a physician might say to someone who is imminently dying, Youre doing so much better. Weve gotten your creatinine under control and your hematocrit is looking better, too. However, you might ask, if there are possible therapies, are these people truly imminently dying? As body organs fail, there is a limit to the rejuvenation capacities of modern medicine. Often a focus on tests or therapies ignores situations that have become increasingly futile. Understanding the course of terminal illnesses and the challenging art of prognostication will be discussed in Chapter 13. Contemporary physicians tend to avoid talking about terminal prognoses; professional norms favor maintaining an optimistic view (Christakis, 1999). There is general philosophical agreement among American health professionals that open awareness is best. It allows the family and patient to support each other, and make important end-of-life decisions. Open awareness provides the vehicle for positive interaction between patient and caregivers, and while it may be difcult, it avoids the pain and suffering that accompanies deceit. All other forms of communication require ever-increasing lies and subterfuge to maintain a false sense of hope. Closed, suspicion, and mutual pretense awareness also rob all parties of important opportunities to complete important tasks, such as leave taking, atonement, and forgiveness.

Open awareness is best. It allows the family and patient to support each other, and make important end-of-life decisions. Open awareness provides the vehicle for positive interaction between patient and caregivers, and while it may be difcult, it avoids the pain and suffering that accompanies deceit. All other forms of communication require ever-increasing lies and subterfuge to maintain a false sense of hope.

Planting the Seeds It takes time to develop the skills of open communication. Begin by sitting beside a patient with life-threatening illness and asking him or her to tell

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you about thoughts and feelings. Slow down. Invite openness by your body language and tone of voice. Ask a question like, How are you doing really? Listen attentively. If the person has not heard a clear message about prognosis from the physician, arrange that. If family need to be brought together to listen to one another, assist as needed.

THE FINAL STAGE OF GROWTH


According to Erikson, the nal task in human growth and development is Integrity versus Despair (Craven & Hirnle, 2003). During older adulthood, many people evaluate their lives, and develop a sense of peace and acceptance for the life they have lived, with all its perceived faults and shortcomings. Failure to nd this peace can cause despair, and a perceived lack of meaning to life. As people age, they usually experience other lossesof friends, family members, and lifestyles. Many octogenarians may be heard lamenting the fact that their companions and peers have predeceased them, and that their world has become empty. For those who feel they have experienced life fully, the greater fear is dying, not death. They often have a sense of peace and acceptance about death itself, but they fear physical suffering. Death in earlier developmental stages presents challenges of life unnished. According to Erikson, the task of young adults is Intimacy versus Isolation, which means that they are seeking relationships. Therefore, a dying 30-year-old man who wanted to marry and have children has to struggle with impending death because he did not fulll one of his major goals in life. The developmental stage of middle adulthood is called Generativity versus Stagnation. So it is that a dying 48-year-old mother has to face the prospect of death knowing that she will never return to nish college and that she will not live to meet her own grandchildren. Recognizing the patients developmental stage and the reality of what may or may not be accomplished before death, nurses need to understand that terminal patients have arrived at the nal stage of life and growth. The dying process offers a rich opportunity for growth, one to be shared by all the participants. They may choose to focus on what is being lost or never accomplished, or reect on the life lived. In this stage of growth, patients may open their hearts and minds to their loved ones, and share their uniqueness and personhood through meaningful dialogue and story, or choose to shut themselves off from those whose lives they have most touched, and languish in their own fear, anxiety, and suffering. This nal stage of growth can be productive or nonproductive. For those willing and able, the nal stage can be a transformative experience. It can be a nal gift to self and others. For those individuals, dying becomes a nal opportunity for awareness and development. In the very shadow of death ones living experience can yet give rise to accomplishment, within ones own and ones familys system of values (Byock, 1998, p. 32). Through an acceptance of death and dying, families can together grow and nd accomplishment. Byock calls this process dying well:

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As a dying person reaches developmental landmarks such as experienced love of self and others, the completion of relationships, the acceptance of the nality of ones life, and the achievement of a new sense of self despite ones impending demise, ones life and the lives of others is enriched (p. 33).

Internet Resource Box See www.dyingwell.com to explore the Web site of Dr. Ira Byock and better understand this concept of dying well.
WWW.

Likewise, Jaffe and Ehrlich (1997) describe the growth that patient and families can share when they are willing to drop all pretense, and use their time together to garner as much understanding and intimacy as possible. Such honesty and involvement leaves each individual enriched and fullled. Although the family must ultimately experience the pain and grief of a loved ones death, the members come away with a sense of satisfaction from their participation in their loved ones nal days.

Life Review
Providing patients with an opportunity to speak about their lives and reminisce can enhance growth during this nal stage of life. By asking the patients to summarize their lives important milestones, nurses can guide them to begin to see their lives as meaningful wholes. They are the only ones who can tell the story of their lives and consider what it means. They begin to see their strengths and contributions to both their family and community. Focusing on challenges they faced successfully in the past gives many patients the reassurance and resolve they need to face their current challenge. For terminally ill patients, such insight may provide a keener sense of acceptance and meaning for life. Knowledge and understanding of the patients past history help nurses to see the patient as whole and complete, and to provide better care. The patient is no longer a metastatic lung cancer, but has become a husband and father who watched his own father die of the same disease. Life review allows nurses to understand a patient with end-stage liver disease as a former sexually abused teenager who stayed in an oppressive marriage for the sake of her children. Seeing the patient rather than the disease improves patient care. Life review provides substance to the life and allows care of the patient as whole and complete, and not as a terminal illness. Story enhances personhood, and enhanced personhood improves the quality of life and care for terminally ill patients. Consider Hanks dying: Hank had spent most of his life on merchant ships and squandered much of his adult life on drugs, alcohol, and fast living that

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resulted in abandoning his family. He had been estranged for many years from his only surviving daughter. Hank considered the telling of his story to be a gift to his daughter. His daughter considered the story a labor of love, which brought newfound understanding for the man who was her father. Rather than facing death alone and full of regret, life review aided Hank and his daughter to experience meaning, reconciliation, and accomplishment in their nal days together.

Seeing the patient rather than the disease improves patient care. It provides substance to the life and allows care of the patient as whole and complete, and not as a terminal illness. Story enhances personhood, and enhanced personhood improves the quality of life and care for terminally ill patients.

As we listen to each patients story, we share a listening presence. Presence is putting aside all preconceived notions, all extraneous thoughts, all self-serving behaviors, and focusing all attention on the patient. It is making the patient the center of the universe. It is exposing oneself in order to allow the patient to put aside pretense. It is joining together in the moment. Genuine presence says to the patient, You are important. Your needs are important. I am here to help, in whatever way I can. I do this because I care. Genuine presence allows patients to express their deepest fears and concerns, and to address their own mortality. Presence reminds the patient that they matter, and that their needs are being heard. The practice of presence is discussed further in the next chapter. Mitch Albom, in his powerful book, Tuesdays with Morrie, describes presence through the words of his beloved teacher, Morris Schwartz. He tells us, I believe in being fully present, Morrie said. That means you should be with the person youre with. When Im talking to you now, Mitch, I try to keep focus on whats going on between us. I am not thinking about something we said last week. I am not thinking about whats coming up this Friday. . . . I am talking to you. I am thinking about you. (pp. 135136). Terminal patients require and deserve this caring presence, especially in light of the losses they continually encounter in the dying process.

SMALL DEATHS
One of the reasons that caring for the dying is so difcult is that dying patients often experience dying gradually, through a series of losses. Each dying patient feels each loss acutely and nurses should be sensitive to the unique experience of each individual. See the following summary of the small deaths that may be faced by a dying patient.

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Loss of Health
As death draws near, symptoms become more apparent and bodily systems begin to fail. Kidney and liver function may slow, leaving the patient lethargic or ultimately, comatose. Cardiac function may become erratic, leading to poor circulation. Pulmonary function may become inadequate, compromising endurance and further straining the hearts ability to pump oxygenated blood throughout the body. Degeneration of nerve cells or tumor growth may affect cognitive ability. The daily tasks of life become more difcult and greater expenditures of energy are required to perform tasks previously taken for granted. The patient and the family witness bodily disintegration.

Loss of Self-Care Abilities


Activities of daily living (ADLs) will require personal assistance and supportive devices, such as walkers, bedside commodes, wheelchairs, and hospital beds. The patient may no longer be capable of bathing, dressing, or eating independently. Some patients are uncomfortable with their increasing dependence upon others, and issues of privacy may cause personal discomfort for patient and caregiver alike. Cultural and prior family dynamics concerning matters of personal hygiene and privacy are especially relevant.

Loss of Relationships
Feeling inadequate and uncomfortable with their own feelings, friends and relatives often distance themselves. The anticipated death may trigger personal fears concerning their own eventual death. With an extended course of terminal illness, loss of friends and loved ones can be quite pronounced to the point of social death, which involves no longer being acknowledged or seen in the eyes of other persons (Kastenbaum, 1995). People who are dying are trapped in a diseased and protesting body and existing in a social order that has virtually no use for them (Moller, 2000, p. 155). In response, those in the world nd their response to the dying patient to be one of withdrawal and avoidance. Jose, who was nursed by one author (Klimkiewicz) had endured a social death. Jose had been living in a nursing home for the past 2 years. He suffered from Parkinsons disease, and he was now incapable of speech or movement. He was fed via gastric tube as his body slowly but steadily curved into a fetal position. Though well cared for physically, the staff had stopped thinking of Jose as a complete person. Jose, who was once a major in the Marine Corps, and a graduate of West Point, was now turned and fed and washed and changed without so much as a hello or good morning. Staff cared for the external body without caring about the man trapped within. It was so simple to forget Jose. It was so much easier not to bear witness to the suffering that this man endured. But those eyes! He had marvelous eyes that spoke of the pain of being forgotten.

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During my rst several visits, Jose looked blankly at me, as though he was unaware of my presence. Slowly he began to accept the fact that I was going to keep coming back, and I was going to give him all of my attention. I asked his permission before taking vitals, or giving him a bed bath. I spoke of current events, and asked his opinion. I asked how he felt, and if there was something he needed. We began to converse, Jose and I. I could tell from his eyes what type of day he was having, or whether he was comfortable. His eyes became his voice, and they laughed and cried. We spoke from the heart of things past and things to come. We marveled at a beautiful sunset and gentle breezes. I will never forget the beauty and clarity with which that man spoke. How sad that more people did not hear him. (The practice of nonverbal presence is discussed in Chapter 6.) Even with patients who have been able to maintain strong family and community connections, the social world implodes as their illness progresses. All but the most essential aspects of living are given up to save strength and energy for essential areas of life. Participation in religious gatherings, such as church, temple, or mosque, may be curtailed or eliminated. Attending celebrations such as marriages, graduations, or promotion parties may be too difcult. Activities such as dining out, going to the movies or theatre, and participating in clubs will dwindle. Through choice or necessity, social interactions are replaced by treatment interactions. As prior social support systems slip away, the patient and family begin sharing their hopes and fears with members of the medical community instead.

Even with patients who have been able to maintain strong family and community connections, the social world implodes as their illness progresses.

Living in Isolation Many people in America live a remarkably isolated life before their dying begins. Many individuals have chosen to be free of ties to committed relationships, family, and a religious community. Often we live far from those we love. We do this in the name of freedom and independence, but the consequence is often alienation and loneliness. We are left to carve out relationships and a sense of purpose from the transient environment in which we currently exist (Moller, 2000). Isolation in living predicts isolation in dying. Even with a network of friends and family, the emphasis on privacy and individualism makes it difcult for concerned friends and family to nd common experience with the person who is dying. They dont know how to act or what to say. Their friend or relative has become a stranger. Their preoccupation with activities or achievement is distant from the dying persons concerns. Likewise, most people have little experience with disability, illness, and dying because these experiences commonly occur behind closed doors in institutional settings.

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However, nurses can guide them to stay connected with the dying person, rather than pulling way.

Planting the Seeds You can play a major role in encouraging friends and family members to visit and maintain supportive connections to dying patients. Many withdraw because they dont know what to say or do. Offer to help them practice what they will say. Teach them to ask the patient what would be helpful. Remind them that actions are louder than words. Encourage them to offer what they do best. For instance, a dying remans partners from the re station visited every day to play cards. He was never alone in the afternoon.

Loss of Intimacy
Knowledge that a life partner is dying often places a strain on the emotional and sexual intimacy shared by a couple. The healthy partner may not have had previous experiences with death and dying, or may be psychologically unable to continue a close relationship. He or she may move out of a shared bedroom, for fear that sleeping together might disturb their loved ones sleep. Likewise, he or she may withdraw as a result of fear or emotional discomfort with the manifestations of the patients illness. Regardless of the underlying reason, the dying partner can be left feeling alone and betrayed by this loss of intimacy.

Loss of Roles
As health continues to wane, family members and friends may step in and begin to assume roles previously held by the patient. A spouse may begin to manage the household budget, as well as social and medical activities. Head of household duties may shift to the living partner, as may household chores. The role of disciplining minor children may shift as well. Adult children may begin asking questions concerning wills, estate planning, and the sale of property. They may begin to assume more dominant roles in decision-making. While the dying patient may still be employed, or attempting to manage an existing business, responsibilities will often shift to others in the organization. Business associates often begin deciding how best to fill the gap, even before the patient has departed. Slowly but steadily, the patients roles and responsibilities in all aspects of life will transfer to others.

Slowly but steadily, the patients roles and responsibilities in all aspects of life will transfer to others.

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Loss of Identity
Identity and self-image are linked to life roles and responsibilities. People often allow society to dene their worth. They identify with the position or titles they hold, the partner they have, the home or other personal belongings they have accumulated. For many people, the loss of vocation is more devastating than death itself. As the terminally ill watch their lives unravel, they may begin to lose a sense of self-worth or personal identity. When the day comes that were ill and can no longer be the banker, traveler, doctor or coach, we have to ask ourselves an important question, If Im not those things, then who am I? (Kubler-Ross & Kessler, 2000, p. 33).

Loss of Independence
Declining health and needed assistance with ADLs limit a patients independence. Activities need to be planned in advance, and timed to ensure adequate preparation and completion. As energy wanes, and dependence on both people and assistive devices increases, the more taxing areas of ones life are sacriced in favor of the more essential elements.

Loss of Financial Security


Many patients recognize that their death has signicant negative effects on the familys nancial security, and feel responsible for the burden they feel they are causing. Death and dying may place signicant monetary strain on family units. As the dying trajectory continues, paid help may be necessary to assist with ongoing family responsibilities, such as house and yard work, or babysitting. For families who are at the higher end of income and savings, disposable income begins to decline as family members provide additional support for the terminal patient at the expense of their own careers. Loss of a principal wage earner threatens future economic security. For those with lower income, paid help is out of the question. Families with dying or caregiving wage earners may find themselves without resources to pay for essentials like food, rent, and heating. After the death, traditional burial rituals can be expensive. In the United States, the costs of medical treatment at the end of life are poorly covered by Medicare and private insurance, and many families are without any insurance. The medical costs of dying and wages lost can heavily burden surviving family members.

Loss of the Future


The human race may be the only species that has a pre-awareness of personal death. By the time we are about 11 years old, we understand that death is permanent and realize the implications of terminal illness (see Chapter 12).

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Nonetheless, in our daily lives, we generally assume that our death will not occur in the immediate future. We enroll in school, sign mortgages, purchase automobiles, and plan vacations with full intent of seeing our plans through to completion. The terminal patient, however, recognizes that such plans are tenuous, at best. He views the future in incrementally shorter periods. Shall I plan on a visit with a new grandchild? Will I live to graduate high school? Will I make it to my next birthday? Further, the anticipation of future events is marred by the knowledge that each will occur later in the disease process, and closer to death. Thus, events that would have evoked anticipation and joy may now cause sorrow and fear. Box 5-2 describes the multiple losses and gradual experience of gradual disengagement by a patient who has Finished My Stay.

Box 5-2
IVE FINISHED MY STAY
By Inge Klimkiewicz

I know I must die; we all do some day. But some day, not this day, Not this day, I pray. I cant go tomorrow, there are bills left to pay. And soon will come weddings and babies, I pray. And what of my husband and children? I say. Who will hold them, and kiss them, and love them As I do, only I do, only I should? I say. I dont mind the pain; its become an old friend. But this friend makes me tired and weak at the end. The things that now surround me dont concern me, I say. Im apart now, unattached now. Soon to go now, I pray. Time gone is time spent, no matter the way. My life was my life, the price I did pay. It was what I made it, and I made it my way. It might have been different; but then whos to say. And who would I be then? I ask and I pray. I may not be ready to leave you today. But its time now, to go now. Ive nished my stay. Go now. Its time now. Im ready. I say.

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Grief in Response to Multiple Losses


Each of these small deaths causes suffering and sorrow. The dying person, family, and friends grieve continually over their losses, and it is important that nurses recognize this and are supportive. Chapter 7 explores the nature of grief and ways nurses can care for people living with persistent grief.

EMOTIONAL SUFFERING AT THE END OF LIFE


In addition to sustained grief reactions, the extraordinary losses just detailed lead to a variety of other emotional reactions. Profound emotional suffering is caused by threat to the wholeness and continued existence of the self (Cassell, 1991). The sufferer becomes aware of the disintegration of identity and purpose. Suffering of seriously ill persons begins with their inability to achieve previously important purposes. The person recognizes what he or she cannot do and is conscious of a lost sense of possibility in the future. Initially, the sufferer feels alienated from self, others, and any sense of meaning (Younger, 1995). Working through such suffering requires an initial silent period when there are no words to express the despair, then an expressive phase when telling ones story is vital. As nurses, we are initially dumbstruck by the suffering, then we begin to listen and help the sufferers nd the words to tell their stories and search for meaning.

Profound emotional suffering is caused by threat to the wholeness and continued existence of the self (Cassell, 1991). The sufferer becomes aware of the disintegration of identity and purpose.

It is important that the nurse recognize that emotional suffering cannot be adequately addressed until physical suffering is relieved. Primal needs come rst. Many patients enter the dying process after a series of tests, treatments, and hospitalizations in which symptoms were not managed. These earlier experiences with the medical community may have left patients fearing inadequate care and still further physical suffering. In a comprehensive national survey (Teno, 2004), 1578 family members were asked about the quality of care where their deceased relative spent the last 48 hours of life. Nearly one-quarter reported that their loved one did not receive adequate relief of pain or dyspnea; half reported that their loved one did not receive adequate emotional support. Physiological needs such as physical pain and other symptoms will dominate consciousness until they are controlled. As overwhelming symptoms are managed, the patient becomes aware of emotional suffering. Emotional reactions are manifested as changes in appearance, behavior, or conversation, or as physiological responses to alterations in the autonomic nervous system. Emotional distress makes it difcult for the patient to experience joy in living, and to experience meaning and connection with others. Emotional turmoil causes signicant suffering among terminally ill patients and seriously reduces quality of

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life. This section addresses how nurses can provide relief and comfort for the following emotional problems: powerlessness, anxiety, depression, suicidal ideations, and anger. Nurses are responsible for identifying these problems, providing therapeutic interaction to relieve distress, and collaborating with medical providers to administer medications that provide relief.

Powerlessness
Powerlessness is the state in which a person perceives a lack of personal control over his or her life. Powerlessness increases as dying progresses. Activities of daily living become monumental challenges. Responsibilities are being shouldered by others. Pain and other symptoms are often out of control. Nurses should attempt to help patients retain as much power and control as possible. No caregiver would consciously or deliberately try to diminish a persons life during its nal phases, but we often do so unintentionally: Here, eat just another spoonful of applesauce . . . Now take your pill dear; you know it will make you feel better . . . Oh here, Ill do that for you . . . (Smith, 1997, p. 1). To the extent possible, it is important to consult patients on their care. They should be asked when it is convenient for visits or assistance with activities of daily living, and consulted concerning treatment options. If patients are competent to make decisions, health-care providers must respect their treatment wishes. Chapter 6, Connecting and Caring Presence, discusses ways to encourage patients making decisions at the end of life. Box 5-3 identies empowering nursing strategies at the end of life.

Box 5-3

EMPOWERING STRATEGIES AT THE END OF LIFE

Power through Attention: Listen so that the person feels truly heard. Power through Identity: Foster self understanding. Ask patients who they are and how they have lived. Power through Knowledge: Continually teach and explain to minimize fear of the unknown. Power through Active Choice: Based on self understanding and knowledge, patients are encouraged to make choices. We then are able to advocate for their wishes. Power through Sustained Network Support: Encourage patients to mobilize their support network and then encourage support network members to sustain their involvement. Power through Imagination: Envision possibilities for quality of life at the end of life and guide the patient to see these possibilities for choice.

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Power through imagination involves encouraging the terminally ill person who is still cognitively intact and functioning with minimal assistance to consider possibilities in the coming months. Does she want to travel? Would she like to live near her children? What does she want to eat that she has been denying herself for years? Chocolate perhaps? What creative decisions could be included in her will? For instance, one high-spirited patient living with metastatic breast cancer chose to re-write her will and gave fanciful vacations to her close friends, who worked too hard and seldom took holidays. Control of Dying Some terminal patients are aware of their imminent demise, and seem to be able to modify the timing of their death, either hastening or delaying the event. We dont know how this happens, but hospice team members witness this again and again. An expert hospice nurse describes her mothers dying: She knew she was going to be dead by Friday. She was working through her list of things to do before she went. The last thing she wanted was to meet her cousin who was living in her mothers home. So he got there at six oclock in the evening and she sat up and had a cup of tea with him. She visited and talked about every family member who existed from the time of her birth all the way through her life. About eight oclock, I was standing at the end of the bed, and she sat forward, and she handed the cup to him. And this look came over her. It was a shadow that traveled from the top of her head all the way down. I said to her, Mom, is this it? And she said, Yes. She lay down and within 30 minutes was in a coma. We called the whole family. When everybody was there, her head fell to the side and within probably 20 minutes she was gone. It was Friday night. For those who have lost the will to live, surrender and death often proceed quickly. Others, especially those with an especially strong will to live, can and do survive beyond reasonable survival estimates. Patients may cling to life in order to complete important goals, or participate in rituals or events, such as anniversaries or holidays. Once the focus of attention takes place, death comes quickly.

Anxiety
Anxiety at the end of life can be dened as fear of what is both known and unknown (Spencer, 2002). The physiological response to fear involves neurohormone release, including cortisol, epinephrine, norepinephrine, and serotonin. Emotional symptoms of anxiety include feelings of fear and dread, worrying, apprehension, nervousness and irritability, and difculty concentrating. The physical effects of epinephrine and norepinephrine include trembling, tachycardia, hyperventilation, shortness of breath, sweating, dizziness, nausea, diarrhea, and severe panic reaction. There are many

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causes of anxiety in dying patients: the small deaths discussed earlier, anticipated loss of self, fear of death, fear of the unknown, fear of dying in pain, and physiological changes. Keep in mind that anxiety often has physical causes in the terminally ill. Anxiety can be an adverse reaction to drugs prescribed to promote comfort. For instance, corticosteroids (prednisone, dexamethasone) are commonly prescribed at the end of life and can sometimes precipitate severe anxiety reactions. Likewise, benzodiazepines prescribed for anxiety can sometimes paradoxically cause anxiety. Organic causes of anxiety at the end of life include hypoxia, dyspnea, fever, hypoglycemia, and brain tumor (AAHPM, 2003). Interpersonal Relief Measures Connecting and human presence are essential nursing responses when patients are anxious. Listening to their human experience is the beginning. In cases of mild anxiety, supportive relationships with health professionals and loved ones are highly effective to alleviate recurrent distress. Nursing interventions designed to relieve anxiety include the following: Naming the underlying cause of fear Encouraging expression Explanation and anticipation of physical events Promoting patient control Encouraging physical presence of support persons Relaxation and deep breathing Imagery and visualization Relaxing music Interdisciplinary referral for counseling Anti-anxiety medication

Consider Amanda, who had been battling cervical cancer for several years when she was admitted into a hospice residence. Her cancer had recently inltrated her abdominal cavity, and her husband, also in failing health, could no longer manage her pain and distress. By 1 month after admission to hospice, Amandas weight had dropped to 80 pounds. She found it difcult to eat more than a spoonful of pureed food at a time, and often did so only to please her husband or family. Metastatic bone pain in her hips and vertebrae had started to become a problem, and she became more and more nervous and irritable. She had many physical signs of anxiety, such as tachycardia and trembling, but it was difcult to distinguish whether the cause was a consequence of cancer or emotional distress. Amandas nurse decided to see if she could name the cause of her apparent anxiety and asked her directly, You seem troubled with something. Are there some particular things troubling you? Amanda replied, Im so afraid the pain is going to get worse and worse and I just cant stand the thought. I feel panicky. This was an opportunity for the nurse to explain the effectiveness of pain relief for metastatic bone pain and

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how the hospice team would keep it in check. She emphasized that Amanda would be in control of how much medication she took. Amandas anxiety about pain control was noted on the care plan and in the change of shift report with a recommendation that staff visit her frequently to be a supportive presence at her bedside, as well as to ascertain her level of pain and medicate accordingly. One hospice nurse taught Amanda to use imagery to relax when she recognized a growing feeling of dread. She learned to imagine herself lying on soft sand with the warm sun heating and comforting her back and hips. She visualized herself at the ocean, feeling the soft breeze and hearing the regular rhythms of the waves. She frequently listened to tapes with the rhythm of the ocean waves in the background. As a result of these interventions, Amandas anxiety diminished signicantly. Then about a week before Amanda died, the nursing staff still saw new evidence of anxiety. They brought their concerns to the interdisciplinary team meeting and the attention of Amandas chaplain and social worker. Working together, it was discovered that Amanda had been raised Catholic, but converted to Judaism when she married. Now her devout Roman Catholic sisters were concerned about Amandas eternal soul and regularly shared their concerns with her. Amanda was very close to her sisters, and she had become preoccupied with their worries. She was terribly conicted. She considered her husband the love of her life, and had embraced Judaism out of her love for him. Together, the staff helped Amanda come to terms with her spiritual distress, and she, with her husbands blessings, received the Catholic Churchs Sacraments of the Sick. Long-acting pain medications kept Amanda comfortable and alert for her constant visitors. She was free of pain and anxiety. She had decided that any day early in January would be all right to die, as it wouldnt interfere with her nieces birthday at the end of that month. She died quietly on January 5th with her husband by her side. Pharmacological Relief of Anxiety Anti-anxiety drugs should complement interpersonal measures when anxiety intrudes significantly on quality of life. The staff nurse brings the symptoms to the attention to the prescribing provider. There are four categories of anti-anxiety drugs (anxiolytics). By far the most commonly used are the benzodiazepines (such as diazepam, clonazepam, alprazolam, lorazepam). Common side effects are drowsiness and sedation. Depressant effects are aggravated in the presence of other depressant drugs, such as antidepressants and opioids (Damron, 2001). Respiratory suppression is always a risk as doses are initiated or increased. Lorazepam (Ativan) can be considered a prototype benzodiazepine and is very popular in hospice care. It has a rapid onset and is short acting. It can be administered by mouth, through the oral mucosa (sublingual), rectally, intramuscularly, and intravenously. A common dosage is 0.5 to 2 mg, three to four times daily by mouth, but dosage and scheduling must be adjusted to individual differences. It is often used for multiple purposes beyond relief of anxiety. For

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example, it also can be used to manage muscle spasm, nausea, shortness of breath, and seizures. Other medications used to relieve anxiety include buspirone (BuSpar), which takes 5 to 10 days to become effective; neuroleptics (major tranquilizers) such as haldoperidol (Haldol) when psychotic symptoms accompany anxiety; hydroxyzine (Vistaril), which also has a direct analgesic effect; and antidepressants when depression accompanies anxiety (Damron, 2001).

Depression
Sadness is a normal human response at the end of life. However, profound sadness can progress to the point of clinical depression. Study by Breitbart and Heller (2003) has revealed that less than 20% of people with a month to live were clinically depressed. Depressive disorders are usually characterized by changes in energy, anorexia, weight loss, fatigue, and disturbances in sleep. However, these symptoms also characterize advancing illness and are of little use in identifying depression in the dying. Therefore, nurses should recognize depressive disorders when such patients demonstrate signicant disinterest in activities and loved ones, inability to experience pleasure, expression of worthlessness, persistent guilt and hopelessness, poor concentration, indecisiveness, and wishing for death including suicidal thinking (Abrahm, 2000). Because the person is dying, health professionals often dismiss these symptoms as inevitable. They are not. Quality of life can be improved through treatment; the nurse must be tuned into the patient and refer to the interdisciplinary team. Some clinical scholars are looking beyond the diagnostic label of clinical depression to identify the components of despair specic to those at the end of life. See Box 5-4. Interpersonal Interventions How can nurses intervene to relieve this troubling level of depression and despair? We can make interpersonal connections, behavioral interventions, meaning-centered interventions, and cognitive interventions. We can also

Box 5-4

COMPONENTS OF DESPAIR AT THE END OF LIFE

Demoralization Loss of dignity Loss of meaning Hopelessness Desire for a hastened death

Source: Breitbart & Heller (2003).

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propose complementary therapies, such as music and imagery. The following chapter, Connecting and Caring Presence, examines the essential relationship skills to develop a rapport with patients. Making that connection is the foundation of all interpersonal interventions. Behavioral interventions reinforce positive self-care behaviors and small achievements so that the depressed patient, whose physical abilities are quite impaired, can remain functional for as long as possible. Meaning-centered interventions focus on helping patients identify the sources of meaning that remain in their lives (Breitbart & Heller, 2003). For instance, a patient who has always found meaning in his career can be invited to consider other sources such as love, family, nature, creativity, responsibility, positive deeds, and spiritual growth. Cognitive interventions are grounded in helping the depressed patient change negative false assumptions that are aggravating depression (Pascreta, Minarik, and Nield-Anderson, 2001). First, the patient is helped to identify self-defeating automatic thoughts, to stop those thoughts, and to consider instead the truth of his or her life. Obviously, there are negative experiences that cannot be changed by substituting positive thoughts. Here are some examples of nurses guiding thought: Mr. J. laments, My life has been worthless. The nurse replies, Tell me about your greatest moments. What has given your life meaning? The nurse then helps the patient develop this positive line of thinking. Ms. A. asserts, My children all turned out bad. The nurse responds, Tell me about them. What are they doing now? The nurse then helps the patient restructure preoccupations based on reality, facing the difcult but bringing out the positive. Ms. J. sadly states, Im nobody now. I was a nursing supervisor in this hospital for 33 years and now Im just one more complaining patient. The nurse replies, Youre nobody? You nursed here for 33 years! Tell me about your career! I bet youve done an awful lot. Pharmacological Interventions Antidepressants should be used with interpersonal measures when depression signicantly impairs quality of life. The bedside nurse clearly documents symptoms to the prescribing provider. Norepinephrine and serotonin are reduced in depressive disorders, and drug therapy seeks to elevate these neurotransmitters. Thus, depression is treated with tricyclic antidepressants, serotonin-specic reuptake inhibitors (SSRIs), and psychostimulants (Damron, 2001). Tricyclics potentiate serotonin and norepinephrine activity. The rst generation of tricyclics includes amitriptyline (Elavil) and doxepin (Sinequan). They are the most studied group of antidepressants. They may take weeks of gradually increasing dosage until a desire effect is attained. Most worrisome side effects include sedation, anticholinergic effects (dry mouth, constipation, delirium), orthostatic hypotension, and cardiac arrhythmias. Given at bedtime,

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they are highly effective to treat insomnia. Tricyclic antidepressants are known to reduce the pain due to nerve involvement (neuropathic pain). The SSRIs increase circulating serotonin. The SSRIs cause less sedation and fewer anticholinergic effects than the tricyclics. Representative drugs include citalopram (Celexa), sertraline (Zoloft), and paroxetine (Paxil). Their benet for neuropathic pain remains uncertain. There are also some newer antidepressants in a class by themselves, such as bupropion (Wellbutrin), which also work to enhance energy. Cost can be a consideration in the use of both SSRIs and newer miscellaneous agents. The psychostimulants include dextroamphetamine (Dexedrine), methylphenidate (Ritalin), and pemoline (Cylert). They elevate epinephrine and norepinephrine levels and act quickly to energize patients and can signicantly promote a feeling of well-being, reduce fatigue, stimulate appetite, and improve attention and concentration (Damron, 2001). Dosage must be carefully adjusted to the individual. Anxiety, restlessness, and insomnia are unwanted side effects. Sometimes depression leads to thoughts of suicide in those nearing death. Suicide Risk Suicidal ideation, or thoughts of suicide, may be due to mental illness or to feelings of profound despair. It may be triggered by the multiple losses previously discussed, particularly loss of control. Physical pain, real or anticipated, may also lead to thoughts of suicide. Box 5-5 identies Risk Factors for Suicide by Dying Patients.

Box 5-5

RISK FACTORS FOR SUICIDE BY DYING PEOPLE

Suicidal thinking and planning Previous suicide attempts Family history of suicide Preexisting psychiatric disorder Social isolation Substance abuse Recent death of loved one Uncontrolled pain or other symptoms Exhaustion and fatigue Impulsiveness; loss of inhibition Fear of being a burden Being an older male Severe existential distress

Source: From AAHPM (2003); and Damron (2001).

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Nurses working with dying people need to be alert to the risk of suicide, particularly when patients begin to talk about it, plan for it, and have the means to succeed (for instance, drugs or guns). Other risk factors include a previous history of suicide attempts, suicide history in the family, preexisting mental illness, social isolation, substance abuse, and recent death of someone close. Nurses should never shut down the topic when the patient brings it up. Rather, we must be willing to acknowledge the issue and ask questions. For example, Damron (2001) proposes the kind of questions nurses should ask to assess each risk: Acknowledging. Most people living with a terminal illness have passing thoughts of suicide. Do you ever think about it? Planning. Have you ever thought about how you would do it? Bereavement. Has someone one close to you died recently? Every effort should be made to control depression and resolve underlying calls for help, as discussed earlier. Suicidal thinking and planning need to be reported to the interdisciplinary team to develop a collaborative and supportive individualized plan of care. A major ethical dilemma presents itself today as many patients ask for assistance with suicide. Does the nurse respect patient choice or refuse to participate in any way? This dilemma is explored is Chapter 9 on Ethical and Legal Issues. Although only a small proportion of terminal patients act on suicidal thoughts, many terminally ill patients do consider suicide at one or more times preceding death. Block (2000) reports as high as 45% of all terminal cancer patients report such thoughts at one or more times during their illness. This is one reason why Humphreys (2002) do-it-yourself suicide book has become a best seller. Final Exit is a self-help book for the terminally ill that describes, in detail, various chemical and physical methods with which terminally ill patients can take their own lives. In 1997, Oregon became the rst state to legalize physician-assisted suicide. This law allows terminally ill patients to request a prescription from their physician for medication that, when taken as prescribed, will cause death. The law does not invite direct physician participation in the terminal event. From 1998 to 2002, 129 patients in Oregon died by physician-assisted suicide. Patients sought suicide as a response to loss of autonomy, reduced ability to participate in enjoyable activities, and lost control of bodily functions.

Internet Resource Box The Oregon Department of Human Services maintains a Web site (www.dhs.state.or.us/publichealth/chs/pas/pascdsum.cfm) that details the provisions of their Death with Dignity Act and provides an annual report.
WWW.

What has not been adequately documented are the number of terminally ill patients, nationwide, who deliberately choose to stop eating and

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drinking. Decreased food intake is common for many patients during the dying process. Many suffer from nausea or difculty swallowing. Dying persons naturally may experience a period of terminal withdrawal during which they lose all interest in food. Some terminal patients, however, simply choose to stop eating and drinking as a way of hastening death. Death normally occurs days to several weeks after the decision is made, depending on the patients physical state when the decision is made (Quill & Byock, 2000). Death brought about by the voluntary cessation of food and liquid is not reported as suicide, and is only known through anecdotal report.

Planting the Seeds Never accept anxiety and depression as natural symptoms of dying that cannot be relieved. Learn to recognize their signs and consider whether interpersonal or pharmacological measures should be offered to enhance quality of life. We can disperse the clouds a bit so that the light can penetrate the darkness.

Anger
Why me? What have I done to deserve this! How could life/God/fate be so cruel? According to Kubler-Ross (1969), anger is often displaced in all directions and projected onto the environment at times almost at random (p. 64). Family members, God, health and social service agencies, and health-care personnel are frequent targets. Often nurses become the targets of this anger. Some anger is normal. People who have lived a chronically angry life are likely to die as they have lived, angry. Box 5-6 identies constructive nursing responses to angry dying patients. Imagine yourself responding to a patient who becomes angry when you bring in her medications late. She begins to shout obscenities and proclaims, You are all torturing me. Youre a bunch of sadists who just dont care! Your initial response might be to defend yourself. Your body might be tense. You might feel a headache threatening and tears welling up. You might be imagining angry words in return. We are all different, but it is critical to be in tune with ones own feelings and not reject the patient. However, you need never passively accept a verbal attack. You might want to give yourself and the patient a time out and make a clear statement like I feel terribly hurt when you call me a sadist. I am going to leave the room to calm down and check on some other patients. When I come back, lets talk about what you are going through. Many terminal patients have been living with chronic conditions for some time. Illness and the continual cycle of tests and hospitalizations may have been a way of life for months, if not years. The following excerpt from an essay written by a nurse and cancer survivor (Hall, 2003, p. 4)

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Box 5-6

CONSTRUCTIVE NURSING RESPONSES TO ANGRY DYING PATIENTS

Understand ones own response and do not reject the patient because of his or her behavior. Accept anger as a natural manifestation of the grief process. Do not accept anger that is abusive to you or another person. Leave the room or home if the patient cannot control emotional or physical aggression. Explain that you will return when the patient is under control. Help the patient name the underlying causes of anger and identify changes that can be made to alleviate the problem. Guide the person to explore more constructive ways to express feelings and solve problems. Advocate for the person when misunderstanding or injustice can be righted. Guide the person to recognize negative consequences of angry behavior.
Source: From Kemp (1999).

bears witness to the anger of many cancer patients as a consequence of being medicalized: As cancer patients we are . . . encouraged to live our lives in fear and trepidation from what might get us if we are not ever-vigilant, and having long ago lost the ability to decide for ourselves that we are safe for a few months longer. . . . Fear of death is constantly reinforced as it is thrown in our faces at every turn in the road. Nobody says, Go out and live your life with abundant energy and joy. Life is short for all of us. Make every day count. Instead we are encouraged to live from scan to scan.

Planting the Seeds Dying is fraught with fears, losses, and suffering. Patients respond to pressures and change in their unique way. What may seem commonplace to one may be anxiety-producing in another. It our task to be aware of all cues presented to us, and respond in the most benecial manner possible. We must put aside our preconceived notions of a good death or a good life, and accept our patients, their view of the world, and their methods of coping. We cannot change our patients. They will die using many of the

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defense mechanisms that aided them throughout their lives. They will die in the extended family in which they live. We can discover the patients unique personhood, and try to make their dying a time of growth and nal accomplishment.

NEAR-DEATH EXPERIENCES
Near-death experience is marked by an altered state of consciousness. It generally results from severe trauma, oxygen deprivation, or any number of sudden, life-threatening conditions that normally result in death. The most common causes of near-death experiences are near-drowning, heart attacks, self-asphyxiation, and wounds. Individuals who have had near-death experiences often do not fear death. Jansen (1996) describes near-death experiences as a ve stage continuum: Feelings of peace A sense of detachment A transitional period of darkness Emerging into light Movement into another realm of light and awareness.

Jansen, a psychiatrist, has looked for a neurophysiological explanation for these age-old phenomena. He believes the causative agent is a neurochemical called ketamine, and is currently exploring methods to support this theory. Regardless of cause, the outcome often includes a changed perception of death. According to Elisabeth Kubler-Ross and David Kessler (2000), people who have a near-death experience are no longer afraid of death. They see death as a shedding of the physical body, no different than taking off a suit of clothes one no longer needs (p. 82). Further, they experience a feeling of wholeness during the near-death experience, and report feeling as though they were never alone or abandoned during that time. They return with reports of bright lights, welcoming spirits, or deceased friends and relatives beckoning them to another realm. The experience often leaves the person permanently changed. Terminally ill patients may have similar experiences. Callahan and Kelley (1997) describe a number of interviews with terminal patients who report visits with a spirit, or to an other world. Experiences generally occur later in the dying process, as the patients physical systems are shutting down. Experiences are generally brief. They may have meetings with deceased loved ones, or nd themselves in a serene, beautiful setting. The experience may not be very specic, but generally leaves the patient feeling peaceful and anticipatory. This type of experience often marks a turning point for terminal patients, and death usually follows shortly thereafter. Dreams of terminal patients may be symbolic of unexplored needs and feelings. Callahan and Kelley believe that caregivers can help terminally ill patients recognize and understand those needs and feelings by being alert

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and carefully listening to what the patient shares concerning dreams. Asking the patient what the dream may mean may provide an opportunity for closure, forgiveness, or acceptance.

CONCEPTS

IN

ACTION

June was a dynamic, 69-year-old widow. She was nancially secure, and had a well-developed circle of close and caring friends. June valued her independence, and maintained the home she had shared with her husband of 36 years, before his death. Always a physically able woman, June rode her bicycle 10 miles each day, and volunteered her time at several community agencies. Then June started to suffer from gastric upset and became jaundiced. Within 36 hours of her visit to the doctor, June was hospitalized, biopsied, and diagnosed with cancer of the liver and spleen. She was given a life expectancy of 6 to 12 months. Upon arriving home, June set about preparing for her death. She reviewed her will, power of attorney, and living will. She began deciding who should receive what after her death, and saying good-bye to her friends and neighbors. Two weeks later, she had mentally completed a distribution of her worldly belongings. June called her daughter, and requested that she come and stay with her. Her daughter has arrived and the community hospice has been called. You are the nurse making the initial home visit. You nd a thin, jaundiced woman with strong circulation and healthy breath sounds. Her mind is clear. She has very little to say but reports, I just want to die. Her daughter is distressed that June refuses to eat, is no longer interested in visits with her friends, and takes no pleasure in anything that used to bring her delight. She will not watch movies or go outside to the garden. She refuses to see any family members. She can walk but is refusing to get out of bed. Since her heart and lungs are strong, June is likely to live a while. Her daughter states, I want my mother back for her last few weeks. What is the likely diagnosis for her psychological distress? In collaboration with the physician, what class of drugs would you recommend? What interpersonal approaches would be helpful? After several weeks of visiting, Junes mood lifts considerably and she is able to experience some quality of life. However, she is quite hostile to you during one visit and abruptly inquires, Arent you the angel of death? Why am I not dead yet? How should you respond to her anger? June becomes completely bedridden and is overwhelmed with her lack of control. What could you do to reduce her feeling of powerlessness?

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References
AAHPM (2003). Pocket guide to hospice/palliative medicine. Glenview, IL: American Academy of Hospice and Pallative Medicine. Albom, M. (1997). Tuesdays with Morrie. New York: Random House. Abrahm, J. L. (2000). A physicians guide to pain and symptom management in cancer patients. Baltimore: Johns Hopkins. Block, S. (2000). Assessing and managing depression in the terminally ill patient. Annals of Internal Medicine, 132(3), 209218. Breitbart, W., & Heller, K. (2003). Reframing hope: Meaning-centered care for patients near the end of life. Journal of Palliative Medicine, 6(6), 979988. Byock, I. (1998). Dying well. New York: Riverhead Paperback. Callahan, M., & Kelley, P. (1997). Final gifts. New York: Bantam Books. Cassell, E. J. (1991). Recognizing suffering. Hastings Center Report, 21(3), 2431. Christakis, N. (1999). Death foretold: Prophecy and prognosis in medical care. Chicago: University of Chicago Press. Craven, R., & Hirnle, C. (2003). Fundamentals of nursing: Human health and function. Philadelphia: Lippincott Williams & Wilkins. Damron, B. (2001). Depression and anxiety. In R. Gates & R. Fink (Eds.), Oncology nursing secrets. Philadelphia: Hanley & Belfus. Georgaki, S., Kalaidopoulou, O., Liarmakopoulos, I., & Mystakidou, K. (2002). Nurses attitudes toward truthful communication with patients with cancer: A Greek study. Cancer Nursing, 25(6), 436441. Glaser, B., & Strauss, A. (1965). Awareness of dying. Chicago: Aldine Publishing. Hall, B. (2003). An essay on an authentic meaning of medicalization: the patients perspective. Advances in Nursing Science, 26(1), 5362. Jaffe, C., & Ehrlich, C. (1997). All kinds of love: Experiencing hospice. Amityville, NY: Baywood Publishing Co.

Jansen, K. (1996). Neuroscience, ketamine, and the near death experience: the role of glutamate and the NMDA receptor. In L. Bailey & J. Yates (Eds.), The near death experience. New York: Routledge. Kalish, R. (1981). Death, grief, and caring relationships. Monterey, CA: Brooks/ Cole Publishing. Kastenbaum, R. J. (1995). Death, society, and human experience. Boston: Allyn & Bacon. Kemp, C. (1999). Terminal illness: A guide to nursing care. Philadelphia: Lippincott. Kubler-Ross, E. (1969). On death and dying. New York: Simon & Schuster. Kubler-Ross, E., & Kessler, D. (2000). Life lessons. New York: Touchstone Publishing. Moller, D. W. (2000). Lifes end: Technocratic dying in an age of spiritual yearning. Amityville, NY: Baywood Publishing. Pasacreta, J., Minarik, P., & NieldAnderson, L. (2001). Anxiety and depression. In B. Ferrell & N. Coyle (Eds.), Textbook of palliative nursing (pp. 269289). New York: Oxford. Quill, T., & Byock, I. ( 2000). Responding to intractable suffering: the role of terminal sedation and voluntary refusal of food and uids. Annals of Internal Medicine, 132(5), 408414. Smith, D. C. (1997). Caregiving: Hospice proven techniques for healing body and soul. New York: Macmillan. Spencer, P. (2002). Anxiety. In D. Kuebler & P. Esper (Eds.), Palliative practices from AZ for the bedside clinician. Pittsburgh, PA: Oncology Nursing Society. Stevenson, B. (Ed.). (1965). The Macmillan book of proverbs, maxims, and famous phrases. New York: Macmillan. Teno, J., Clarridge, B., Casey, V., Welch, L., Wetle, T., Shield, R., & Mor, V. (2004). Family perspectives on endof-life care at the last place of care. Journal of the American Medical Association, 291 (1), 8893. Tolstoy, L. (1981). The death of Ivan Ilyich. New York: Bantam Books. Younger, J. (1995). The alienation of the sufferer. Advances in Nursing Science, 17(4), 5372.

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C H A P T E R

Connecting and Caring Presence


Philosophical Reections Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. . . . Compassion means full immersion in the condition of being human.
NOUWEN, MCNEILL, AND MORRISON, 1982, P. 4

Learning Objectives 1. 2. 3. 4. 5. 6. 7. Dene caring, compassion, connecting, and responsive use of self. Describe ve dimensions of listening at the end of life. Identify ways to speak truth about difcult subjects at the end of life. Explain ways to encourage patients decisions at the end of life. Dene the practice of presence and its dimensions. Describe the practice of connecting with disenfranchised populations. Evaluate nursing interactions to identify ways to strengthen the practice of connecting and caring presence.

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As has been discussed, competency in caring for patients at the end of life is rooted in keeping ourselves healthy and working collaboratively. In the End-of-Life Caregiving Model, the trunk of the tree visually represents the development of the nurse-patient relationship through connecting and caring presence. The trunk connects the roots to the branches. When strong connections are not developed with patient and family, end-of-life care is limited to technical tasks that are out of touch with the human being. This chapter explores caring, the dimensions of connecting in relationships, the challenges of connecting, and caring presence.

CARING
Human beings survive and thrive through caring for each other. Caring afrms the dignity and preciousness of human life (Roach, 1984 ). The commitment of nursing to human caring, relationships, and human community contrasts with social trends that emphasize materialism, individualism, and competition. The capacity to care has been repressed, so nursing often is practiced within a society that does not care. We are constantly being asked to turn our faces away from our own internal images of what is right, true, and most of all alive for us (Whyte, 1994). Boykin and Schoenhofer (1993) propose that all relationships are opportunities to draw forth caring, to reinforce the value of each person. Relationships are chances to celebrate humanness by appreciating others as whole persons. Through caring we seek to know the uniqueness of persons and to support, strengthen, and sustain them in their processes of suffering and growth. Compassion is the foundation for caring. The word compassion is rooted in the Latin words pati and cum, which mean to suffer with. Compassion requires more than kindness. It requires us to walk in the shoes of those who are hurting and afraid, to feel the strong connection between their experience and our own. Sometimes in our lives we are not able to offer compassion because of our own pain and fear. We are so preoccupied with our own suffering that we are not able to attend to the suffering of another. Staying healthy, as discussed in Chapter 3, is the root of compassion. By caring for ourselves emotionally and physically, we are able to sustain compassion. Connecting is the outward expression of compassion.

CONNECTING
In the End-of-Life Caregiving Model, connecting involves the nurse joining or linking in partnership with the patient and family. Connecting begins with the nurse having a strong sense of shared humanity. Feeling those common bonds, she chooses to establish a connection by developing a caring relationship. The partnership with patient and family is built through the practice of responsive use of self, listening, speaking truth, encouraging choice, building trust, and practicing human presence.

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By caring for ourselves emotionally and physically, we are able to sustain compassion. Connecting is the outward expression of compassion.

Responsive Use of Self


SmithBattle, Drake, and Diekemper (1997) dene responsive use of self as the process that expert nurses use to come to understand the lives of vulnerable clients. These nurses are not passively hearing their clients stories. Instead, they continually reect and respond with growing insight as they discover the other persons life. The authors vividly describe nurses situating themselves in the worlds of their clients to understand how their clients live, to discover their beliefs, and comprehend their social connections. They learn to see clients as members and participants of families and communities and begin to appreciate how this social embeddedness shapes and organizes clients beliefs, actions, choices, and possibilities (p. 82). Assumptions and stereotypes are overturned as the nurses come to know families very different from their own. A highly experienced nurse describes her responsive use of self in coming to know and appreciate people who lived in very difcult circumstances: Survivors Being able to be in that shabby environment with my dying patient and her husband, who lived a life that was totally foreign to me, people who drew knives on each other, was remarkable. I was able to nd truly great things about them and recognize who they were. I dont think these people ever had much validation. People had always criticized their shack and their drinking and saw everything wrong. They had not heard any validation about being the survivors they were. Responsive use of self is an important component of connecting; another key element of connecting is listening.

Listening
Listening is vital to connection. Effective listening is the art of developing deeper silences in yourself, so you slow your minds hearing to your ear s natural speed, and hear beneath the words to their meaning (Briskin, 1996). Active listening involves continual decoding of the thoughts and emotional messages of others (Craven & Hirnle, 2003). It involves quieting the mind and totally focusing on the patients words and nonverbal cues. Listening creates a holy silence. When you listen generously to people, they can hear truth in themselves, often for the first time. And in the silence of listening, you can know yourself in everyone (Remen, 1996, p. 220).

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Box 6-1

GUIDELINES FOR LISTENING

1. Create a physical environment that fosters listening. Eliminate physical barriers. Reduce distractions. Take time. 2. Place yourself at the same level as the other person, not standing above. 3. Speak in a normal tone of voice or as needed if the person is hard of hearing. 4. Maintain eye contact and use touch unless culturally inappropriate. 5. Do not ask questions that can be answered with a simple yes or no. Instead, ask those that are open-ended and encourage expression. 6. Restate and summarize the essence of the messages you hear to indicate that you understand what is being said and to encourage elaboration. 7. Listen for underlying feelings and then reect them back to verify these emotions with the patient. 8. Continue to seek clarication of the patients thoughts and feelings. 9. Allow time for silence when the patient needs time to think or is having difculty expressing himself. Sometimes there are no words truly adequate to respond to the suffering described. Silence without physical withdrawal may be the best response.

There are a number of guidelines nurses should follow to learn the art of listening (see Box 6-1). For example, nurses should sit at the same level as patients. Being at the same physical level eliminates the physical intimidation or power division represented by standing over or sitting higher than a patient. Eye contact, where culturally appropriate, is also critical to foster trust and to let patients know you are with them listening. Listening at the end of life has ve dimensions: hearing what is being said, believing what is said, understanding their story, opening up difcult subjects, and discovering truth.

Hearing An expert nurse explains her focus: I want to be able to hear people. I want to be able to hear whats not said so I watch body language and eye contact with me and with each other. Frequently people talk, but no one hears the message. We must seek to pay attention, even though the words may be difcult. A hospice expert explains how she developed her ability to hear:

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I was never around swearing and early on I used to let those words interfere with my ability to hear. So if someone said f____ to me, I didnt hear the pain and frustration. It was a real challenge to move beyond the words to the feelings that were behind them and to help people express them by saying the words hurt or angry or frustrated. This ability to hear is particularly helpful to patients when others cannot hear what they are saying. For instance, a husband may not be able to hear his wifes feelings and fears because of his own emotional distress. Likewise, a physician may not be able to hear a patients complaint of pain because of his or her own denial and fear. The nurse often becomes the sounding board for upsetting words like I am so afraid.

Planting the Seeds Sometimes patients tell us things that upset us so much that we tend to screen out their words. Hearing a patients fear and pain requires being aware of our own feelings and quieting them. Believing If you seek to believe what patients say, you will build a strong bond with them. Many times, dying people make statements that others doubt. They may describe experiences or symptoms such as pain or dyspnea that family or other professionals refuse to believe. We may not believe them because we dont want to face their suffering; it is too painful, so we discount it. We may not believe them because we fear being deceived; we see ourselves as experts on their disease and they dont t the usual pattern. Here are two examples of believing patients report of symptoms: I Didnt Discount Every time he told me how bad it hurt and how much medication he had to take, we would talk about his options and I encouraged second opinions. He often had problems with the technological management not working. His report was very important. I didnt discount him at any time. The Pest She was old and needy and would talk your leg off. Others told her she was a pest when she said that her oxygen wasnt working right. Before I came to her home and believed her, she had not had enough oxygen for two days. In addition to believing reports of physical distress, we must also respect that people know what is best for their own living and dying. A nurse

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explains, I always believe in him. I always let him take the lead. This approach can be quite different from the paternalistic one that health providers often take, assuming they know what is best for patients lives.

If you seek to believe what patients say, you will build a strong bond with them.

Understanding Their Story Discover who the person is. From the rst visit, you can ask people to tell you their stories. Initially, that might be their medical journey from diagnosis through treatment, and now, palliation. Over time, invite stories of their lives, victories, and disappointments. You might ask to see family pictures. Encourage friends and family members to reminisce together and with the patient. Even when the person is comatose or just after death, you might ask, What was he like? Often, people need a little prompting to tell stories about their lives. Reminiscence and life review are great gifts of listening to people at the end of their lives.

Reminiscence and life review are great gifts of listening to people at the end of their lives.

Whenever we listen to peoples stories, we are likely to build trusting relationships. For people with many trusted loved ones and little societal conict, trust may come readily. On the other hand, patients who have encountered betrayal and mistrust may be quite resistant to letting nurses into their lives. Here is an example of initial mistrust, which the nurse was able to relieve by listening and emphasizing patient choice: Be Patient with Me She lived without furniture in her roach infested apartment and she wouldnt talk to me. She wouldnt answer anything. We just spent a long time together. I knew that she basically was waiting to nd out what I would say. Finally, I told her, You know, I might make some mistakes. I want you to be patient with me. Im here to listen and to make sure you dont have pain. And Ill do everything I can to keep you at home and to hold your children next to you. And she started crying and said thats all she wanted.

Opening Up Difcult Subjects At the end of life we can create strong connections with patients by inquiring about matters that no one else has the courage to bring up. It is such a relief to many patients to able to speak about their difculties. Of course, if you ask

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Box 6-2

QUESTIONS TO OPEN UP DIFFICULT SUBJECTS

What are your greatest concerns? What is it like for you right now? Youre really sick. What do you feel is happening? How are you doing with this? How are you within yourself? I hear youre having a bad time. What did the doctor actually tell you? What do you think is happening? What are they telling you? What really matters for you right now?

about difcult matters, then you must listen to what they say. A nurse explains how rewarding this is: You are just so thankful that you are able to say the words to the patient to help her talk about it. Byock (1997) proposes asking, How are you within yourself? Consider the following words as openings: I hear youre having a bad time. Whats it like for you right now? What do you feel is happening? See Box 6-2, Questions to Open Up Difcult Subjects, for some examples of questions that might work to open up difcult subjects. Consider the words that you would choose to encourage a patient to express worries and concerns. By asking these difcult questions, and by listening to and validating the responses, you can connect to patients at the end of life on a deeper level, which will not only make the patients end-of-life experience better but will also enrich your relationships with patients.

WWW. Internet Resource Box See www.dyingwell.com to explore the Web site of Dr. Ira Byock, who recommends certain conversations that are important to have with people at the end of their lives.

Speaking Truth Listening is critical at the end of life, but it is also important to speak the truth about what is happening in a persons life. Dying people and those who love them are adjusting to and coming to terms with what is really going on, and you can be there to help them. When people are enduring life-threatening illness, the health team focus is usually on encouraging them to comply with

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treatment. We feel obliged to point out the positive and to reassure patients that everything is going to be all right. Friends and family members feel obliged to do the same. The result can be that no one speaks the truth or ever approaches the topic of life ending. Nurses should speak honestly about what is happening. A hospice nurse explains, Usually people are just grateful, grateful to hear truth. Truth sets people free. It sets families free, sets patients free. They no longer have to keep secrets. Then that truth can empower them to make choices. Hospice and palliative-care programs in the United States have strongly emphasized speaking the truth about terminal prognoses and issues related to treatment. However, it is important to recognize that many traditional cultures around the world forbid telling the patient that he or she is dying. Terminal news and end-of-life decisions are left to families and those with traditional authority. The chapter on cross-cultural caring addresses the nurses challenges when speaking the truth is forbidden by cultural traditions. Speaking truth begins with opening up difcult subjects, as previously discussed. We need to say the words that permit honesty. Timing this is quite challenging. Knowing when to push and when to back off is not easy. You need to open up the difcult subject, then pay attention to verbal and nonverbal responses. If you receive signals that a patient does not want to talk, you must never force the conversation. Such a situation is illustrated in the case of nurse Jamie Nguyen visiting 45-year-old Martha Bixler, a home hospice patient. After the third home visit, Jamie sits down with Martha and explains his assessment and the meaning of the symptoms she is experiencing. Martha is living with metastatic cancer, which has metastasized to multiple organs. Following a moment of silence, Jamie asks Martha, How are you really feeling now? Martha shoots back, Really awful, what do you think? Whats going to become of my children! They need me! Jamie remains silent and then asks, Are you able to talk to your husband about it? Martha turns away and mumbles, Whatever. Im too tired to talk about this. Would you leave now? Jamie responds, Of course. Well talk more on Wednesday, and lets himself out the front door. Jamie has learned to open up difcult subjects, but then to back off and not push when the patient cuts off further discussion for the time being. We welcome discussion, but we never force it. Although we seek to speak the truth when patients and families choose, the truth is ever changing. In the 21st century, people with end-stage illness are successfully pulled back from the brink of death over and over again. Everyone has become treatable. No one can say with certainty when they will die. Nevertheless, when death hovers closely, nurses can offer an opportunity to speak truthfully about that. If the physician has not recently given prognostic information, then we can help patients and family members to ask the necessary questions of the physician about what is going on. People are getting in touch with whats really going on and were there to help them with that (Zerwekh, 1994, p. 31).

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DENIAL Some patients are unable to recognize or acknowledge when the end of life is near. Nurses should be mindful of this perspective and should not force upfront conversations. In the following two examples, both patients want to avoid speaking about their true conditions, but for different reasons. Connecting involves speaking the truth, but only to the extent that patients have an ability or desire to incorporate it. Zest I was impressed with their zest for life. I told them that I would answer their questions honestly, always tell the truth. But we rarely talked about death and dying. We talked about the moment-to-moment things that were happening. Whenever I visited, they would take only a couple of minutes out of each visit to focus on reality. We had to talk gently around it. Even when death is close, some people never let go their zest for life. We must respect their denial and follow their lead about what in the moment is vital in their lives. Miracles I have seen Ruth perhaps four times. We talk about Bernie Siegels Love, Medicine, and Miracles and about her holy water from a sacred place in Yugoslavia. She prays continually for a miracle. She tells me, I know I am sick and I dont want to talk about it. The air is fragrant with Secret Garden spray failing to cover the odor from her draining lesions. Ruths power of positive thinking is keeping her alive as malignant melanoma consumes her lower body. I go into the kitchen and speak to her daughters as they ask me what is really happening. With them I can speak the truth. They ask me what is happening. Connecting with patient and family involves speaking the truth if they choose. Decisions at the end of life are made possible when we are able to speak truthfully about life ending.

Encouraging Decisions
When the truth is being told, people can make informed decisions about how they will live and die (Zerwekh, 1994, p. 33). You can promote selfdetermination at the end of life by assessing what people want, fostering communication about decisions, respecting those decisions, and advocating for their decisions when the social or medical system puts up road blocks. Once the truth has been opened up for discussion, assessing decisions involves attentive listening and questioning. First, a dying person needs to become aware of possible decisions to be made. Such decisions include nal

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Box 6-3

EXAMPLES OF END-OF-LIFE CHOICES

How will the patient relate with friends and family? Are there matters to be resolved? Is there need for thanks or forgiveness? Are there people who should be seen? How will the patient resolve nancial matters? Is there a will documenting what he or she desires? Will the patient seek aggressive treatment until the end of life? Does he or she understand the consequences? What are the limits of what he or she wishes to be done? Has a durable power of attorney been designated to make medical decisions when the person is no longer capable? Where does he or she want to die? Who should be there? Does he or she desire spiritual counsel? What would be helpful to nd spiritual peace?

family matters and business matters as well as options around dying itself. Patients and family members usually need assistance to reect, make up their minds, and express their choices. You can promote communication about decisions. At the end of life people need help to realize all of the choices they have. Box 6-3 lists Examples of End-of-Life Decisions. Treatment Decisions Each medical intervention at the end of life should be chosen by patients and families, rather than imposed by health-care providers. Remember that patients have a right to informed consent before treatments are initiated. The doctrine of informed consent proclaims that a mentally competent person has a right to make an informed decision about treatment alternatives. See Box 6-4, Principles of Informed Consent. Nurses can help people understand treatment choices and make treatment decisions by translating medical information into lay terms. Patients often feel more comfortable asking nurses for the critical information needed to make difcult treatment decisions. As each treatment option presents itself, nurses should inform patients that they can choose to accept or reject the treatment. Often, proposing a trial period for the treatment or its withdrawal may be useful. For instance, a young woman with total bowel obstruction is vomiting fecal material. You might suggest that she could choose a trial period of slowing her TPN infusion to see if the vomiting is diminished. Suppose an opioid nave patient is hesitant to begin taking long-acting morphine for pancreatic cancer because it is important to him to remain alert and communicate with his family. You can explain the drug action and that initial side effects may include some nausea and sedation, which then usually disappear. You might encourage a

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Box 6-4

PRINCIPLES OF INFORMED CONSENT

The person giving consent must: 1. Be capable of understanding the relevant facts. This requires that the person is mentally competent. 2. Be given a translator if necessary. 3. Be provided with all of the information on treatments, risks, benets, and alternatives necessary for a reasonable person to render an informed decision. 4. Be more than 18 years old or emancipated. 5. Not be coerced to make the decision. 6. Be granted the right to have all questions answered to ensure understanding. 7. Be given the right to have the consent in writing.

5-day trial period before the person makes the decision to reject or accept the medication.

Each medical intervention at the end of life should be chosen by patients and families, rather than imposed by health-care providers.

Sometimes family members decisions are in conict. For instance, a dying husband may want no code and hospice care. His wife may want everything done so he can stay with her. The nurses role in that circumstance is to encourage them to talk to each other. Nurses frequently guide loved ones who are unable to discuss difcult subjects to speak to each other. The nurse may be the one who brings the conict into the open. Even though informed choice is strongly emphasized in the United States, many individuals because of their personal, family, or cultural history may not wish to make a choice. They may delegate decisions to family members or the health-care team. If someone other than the patient is the decision-maker, nurses are often in the role of advocating for the patients best interests. You may be the one who brings the patients suffering, concerns, and opinions to the attention of decision-makers. Some choices must be limited because patients are cognitively impaired due to mental illness, developmental disability, alcohol, drugs, or terminal pathophysiology. You may have to make a difcult judgment call to deny patient choice when that choice may be self-destructive. Because we are in the home or present at the bedside in hospital and nursing home, nurses are continually setting limits when we observe self-destructive behavior due to cognitive impairment. For example, in the home we may advise families that their loved one is no longer able to drive or cook or get out of bed or

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take medicines or live alone without help. We identify patients risk of injury due to cognitive impairment. Likewise, in hospital and skilled nursing facilities, nurses protect patients from countless threats, such as falls and skin breakdown, by taking charge when patients can no longer think clearly. Respecting decisions that we would not choose ourselves is a great challenge. The ethical principle of autonomy, however, requires nurses to put aside their own feelings and respect the end-of-life decisions that competent patients render. Troubling choices are wide ranging and include decisions that contradict traditional medical practice, challenge mainstream social values, or go against what we usually consider common sense. For instance, patients may make risky choices involving drugs and alcohol or staying with abusive family members. Even the most broad-minded nurse can be unsettled by choices that include suicide or active euthanasia, decisions to go through extraordinary suffering without symptom relief, or decisions to withdraw from outside assistance and die alone.

Planting the Seeds You need to balance respect for individual self-determination with your responsibility to do no harm and protect the suffering. Turn to the interdisciplinary team to explore troubling situations. Sometimes you may need to withdraw from the case rather than witness the effects of self-destructive behavior. Advocating for Choice Often, agency policies or individual professionals do not want to make exceptions to their usual ways of doing things. Consequently, nurses often advocate for patient choices amidst system resistance. After the truth has been spoken and the patient has decided on a course of action, you may have to run interference with a resistant medical or social system. You may need to explain patient preferences to physicians, hospitals, community agencies, and reimbursement sources. You might say to the physician, The patient has told me and his family that he wants to stop chemotherapy. Or, you might explain to the hospital administration, This patient wants to have chanting and prayers at his bedside until he dies. Hes going to need a private room. Another example would be speaking for the patient about to be discharged from a home-health agency, He is at great risk of injury if we discharge him now. He is too weak to care for himself. Sometimes the nurse may be called upon to stop aggressive resuscitative interventions if the family has called 911 or if the patient is brought to the emergency room or intensive care unit. Patients should be encouraged to complete living wills and set up durable powers of attorney. In the absence of explicit legal documents, the nurse should articulate the patients choices by recording them and speaking out.

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For instance, a hospice nurse might explain to the emergency room physician, He is a hospice patient and he has repeatedly told me he didnt want to go on the vent again. He has liver, bone, and brain mets. When the patient and family are unable to speak, we become their voice, and that is at the essence of connecting.

Practicing Caring Presence


The practice of caring presence can be dened as the intentional authentic responsiveness of the nurse to another human being. The nurse is sincere and expresses genuine caring feelings. The practice of caring presence is also known as healing presence, practicing presence, being present, presencing, and being there (Zerwekh, 1997). This concept is founded in the thinking of existential philosophers and theologians. The concept of the I-Thou relationship instead of an I-It relationship is central. As rst explained by Martin Buber in 1923, we can come into a sick persons presence either by treating her as an It whom we are investigating and probing, or as a fellow human being or Thou. Sr. Madeline Clemence Vaillot (1966) was the rst to apply existential philosophy to nursing. She invited nurses to see patients as presences instead of objects. She believed that practicing presence would result in growth of nurse and patient. Practicing presence requires deliberate, focused attention; receptivity to the other person; and persistent awareness of the other persons shared humanity. When we focus our attention on another person, we deliberately let go of the distractions. We are aware of our minds chatter, and we consciously clear our mind. Our only thoughts are focused on that person. By practicing receptivity, we are willing to take in that persons words and feelings. Box 6-5 contains quotations from the The Art of Being a Healing Presence (Miller & Cutshall, 2001) about how to practice presence. Interviews with the expert hospice nurses revealed four ways of practicing presence with those close to death: Being without words Paying attention Being physically present Being where they are emotionally

Being without words is a deep level of connection. The nurses describe silent, wordless connections: The essence of me is sharing with the essence of them beyond the words were talking about. She couldnt talk anymore. She was looking at me. This was like hell being trapped. She knew that I knew. You look at each others eyes and you know whether the night went well or not. A simpler indication of human-to-human communication beyond words involves shared experience, We shared the rst dandelion of the spring. We sat silently and sipped the tea. Paying attention is integral to every nursing action, and is certainly a way to connect. The nurse practicing presence is attuned to the entire patient and

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Box 6-5

QUOTES FROM THE ART OF BEING A HEALING PRESENCE

Healing presence is the condition of being consciously and compassionately in the present moment with another or with others, believing in and afrming their potential for wholeness, wherever they are in life. p. 12 You have to stay awake to each unfolding moment. p. 15 We will have to persist in quieting our minds chatter if we want to really hear what another person has to say. p. 17 As you become more clear about who you are and why you do what you do, you will become more receptive to whomever youre with. p. 23 Consciously create a space for another that feels welcoming, quieting and secure. p. 27 Let go of what was happening just prior to this time you have together. . . . If you dont have much time to prepare, perhaps you can simply stand for a moment and take a deep breath or two. p. 32 Honor the others signicance. p. 36 Sitting in silence with others can be deeply healing. p. 40
Source: From Miller & Cutshall (2001).

family situation. A nurse explains, I pay attention to what is going on. I go in and read the situation. Nurses follow the patients lead. Paying attention is holistic and surveys all that is happening. Some nurses describe it as having your antennas out or detecting whats really going on. First of all you get a baseline assessment in terms of physiological, psychosocial, and spiritual issues. From that baseline you get some understanding of what theyve gone through, what their understanding is, who their supports are, what their beliefs are, why theyre here in this life. Being present so they are not alone is quite challenging in todays healthcare system. This is the most literal way to practice presence and includes being physically nearby, frequently at the bedside to respond to needs, and available during crises. The greatest fear of dying people is abandonment (Byock, 1997). The health-care system ideally would ensure dying people 24-hour availability of skilled nursing at home, but currently this is only the case in hospice programs. Nurses should make efforts to mobilize a dependable

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back-up caregiving system for patients dying at home. Nurses who can be so available describe the satisfaction of continuing presence through hard times. We promise them we will keep being there. We are there in a way that they dont have to do it alone. If you are in an inpatient setting, it is important to arrange schedules so that dying individuals are seldom alone. In skilled nursing facilities, it is often the nursing assistants who guarantee physical presence at the end of life. Being where they are emotionally involves tuning into the persons emotional world through responsive use of self. People are accepted and validated. An expert nurse explains, Meet them where they are. Just be present. Let them talk. Dont force your ideals. Nurses need to connect with the person at that persons level. Every person is different and calls for an individualized response. To do this, one nurse calls herself a chameleon as she modies her approach based on where each person is emotionally. Here is one expert nurses story of the kind of exibility required by nurses caring for patients at the end of life and their families. The nurse describes tuning into the emotional world of a patients only caregiver: Totally Macho He has been her pimp and misused her for years. But he loves my dying patient and their kids are all she has. So I dont start putting value judgments on him just because hes a louse and totally macho. Their caregiving system is working right now. This man and I just sit on the front step of the house in the middle of summer heat and talk and talk and talk. We get up and walk. He shows me the neighborhood bars and talks and talks about how his heart is breaking because he is losing her. Without him, she could not stay at home to die with her children around her.

CHALLENGES OF CONNECTING WITH PEOPLE LIVING ON THE MARGINS


The Totally Macho story illustrates one of the real challenges of connecting. Sometimes we nd ourselves greatly conicted about reaching out to certain people. They may live in ways that challenge our deepest values. They may hold cultural or religious beliefs very different from our own. Caregivers may not provide safe and humane care. Patient and family members may be abusive to each other or to us. Their housekeeping skills may be terrible. Sometimes the truly broken overwhelm us; when by the time they reach us, they are physically unappealing, disturbed, abusive, confused, unreachable, and often visibly ungrateful. . . . The gulfs of class, race, economics, experience, and expectation separate usthen it is little wonder that we are ready to declare them beyond our caring (Hilker, 1994, p. 179). In such situations, it is important to be aware of our own reactions, consider

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our own capabilities and limits, and make every effort to reach beyond these preconceptions and judgments to connect. Sometimes we will need to nd other caregivers rather than impose our judgment and anger on vulnerable patients. Some nurses are particularly skilled at working with clients living on the ragged edge of society, people who are marginalized and living in difcult circumstances. Patients such as those with chronic mental illness, criminal histories, stigmatizing physical illnesses, and poverty can be characterized as separated from human community and living in fear as well as causing us to fear (Zerwekh, 2000). Disenfranchised people are dened by their own fear and by the avoidance of others because they are afraid of their behavior or afraid of encountering their intense level of hardship and suffering (p. 51). Nurses who persistently care for people living on the ragged edge nd meaning in their work through belief in shared humanity, through experiencing their work as a religious or philosophical calling, by the gratication of overcoming great challenges, and often by perceiving disenfranchised people as similar to members of their own families. Caring on the ragged edge emphasizes the practice of connecting, with particular focus on honoring mutual humanity and knowing patients life stories; it involves connecting the disconnected with community resources. This may require a type of relentless effort, which one nurse has described as haunting the case. Nurses often find themselves mediating with bureaucracies to obtain needed services and to request exceptions to bureaucratic rules. For instance, a client may need electricity turned back on, requiring countless phone calls. A client may be hungry and the visiting nurse may buy food and bring it to the home, against agency rules. Nurses caring on the ragged edge make patient self-care possible through teaching and respecting choices. They specialize in working with people who are living in intense emotional turmoil, often alternating between anger and fear. One nurse describes how she connected with a paranoid woman suffering from metastatic breast cancer: She didnt trust anybody and didnt want to do anything. . . . She would throw things and curse and have ts. . . . I sat many, many hours with her to discover what it is she needed to know. And I nally realized that she needed everything explained . . . and then re-explained. She had a very hard time understanding. If she didnt understand, it angered her. . . . I agreed to answer her questions as many times as she needed as long as she gave me a little leeway and time. The challenging practices of connecting and human presence support the branches and leaves of the End-of-Life Caregiving Model. The stronger the trunk, the stronger our ability to provide care. Understanding of grief and loss, covered in the next chapter, is an essential dimension of being able to connect.

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CONCEPTS

IN

ACTION

In each of the following three stories, the nurse is challenged to listen and respond effectively. Apply the guidelines discussed in this chapter to Gretchen and Todd, Joseph, and Sally.

Denial and Fear: Gretchen and Todd


Todd is 27 years old and worked as a bartender at Harrys Hideaway until his diagnosis with metastatic colon cancer. He has had a colostomy and also suffers with a perineal stula draining a large amount of bloody mucus. Hes strikingly handsome, green eyes, freckles, and red hair. He loves boats, fast cars, liquor, and girls. His latest girlfriend, Gretchen, is 19. You nd them in bed together in the hospice unit where he is dying. Todd is lying in a fetal position and Gretchen is curled around him, crying softly. When you enter the room, Gretchen moves to the chair beside the bed. You introduce yourself and ask Todd how he is doing. He replies, Were ghting hard. Im gonna lick this thing, whatever it takes. How should you respond? You ask Gretchen how she is. She looks at you sadly, wordlessly. You suggest she join you for a cup of coffee in the family lounge. Alone there, she says, Im so afraid. What do you say?

Anger: Joseph
Joseph has had a lot of shoulder and back pain. Over 3 years, he has gone through many diagnostic procedures but no effective treatment. Several times, doctors told him the pain is all in your head and youre becoming addicted to these narcotics. Finally, his debilitating pain was diagnosed as lung cancer, metastasized to the right scapula. By the time you meet him on the oncology unit, he is receiving continuous subcutaneous morphine infusions and has an inoperable bowel obstruction. Joseph is 70 but appears to be 55. He is described in report as angry, resentful, and frustrated. He has been rude to the entire nursing staff. You walk into his room and sit down, explain you are a nursing student who will be caring for him, and ask how he is feeling. He immediately responds, What do you want with me? Am I a guinea pig or what? How might you best respond?

Independence: Sally
Sally proudly describes herself as a Mountain Lady, ercely independent, and she wants to return home to her isolated house in a rural county. She proudly asserts that she has always been self-sufcient. Now she has end-stage heart failure and has been treated for pulmonary edema, which is becoming refractory to treatment. She is breathless walking from bed to (continued)

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CONCEPTS

IN

ACTION

(CONTINUED)

bathroom. You are discussing discharge plans and the physicians hospice referral. When you suggest that a nurse will come to the house, she angrily responds, I dont want anyone messing in my business. How can you best respond?

References
Boykin, A., & Schoenhofer, S. (1993). Nursing as caring: A model for transforming nursing practice. New York: National League for Nursing. Briskin, A. (1996). The stirring of soul in the workplace. San Francisco: Jossey-Bass. Byock, I. (1997). Dying well: The prospect for growth at the end of life. New York: Riverhead Books. Craven, R., & Hirnle, C. (2003). Fundamentals of nursing. Philadelphia: Lippincott. Hilker, D. (1994). Not all of us are saints: A doctors journey with the poor. New York: Ballantine Books. Miller, J., & Cutshall, S. (2001). The art of being a healing presence. Fort Wayne, IN: Willowgreen. Nouwen, H., McNeill, D., & Morrison, D. (1983). Compassion: A reection on the Christian life. New York: Image Books Doubleday. Remen, R. (1996). Kitchen table wisdom: Stories that heal. New York: Berkley Publishing.

Roach, M. S. (1984). Caring: The human mode of being, implications for nursing. Toronto, Canada: University of Toronto. SmithBattle, L., Drake, M., & Diekemper, M. (1997). The responsive use of self in community health nursing practice. Advances in Nursing Science, 20 (2), 7589. Vaillot, M. C. (1966). Existentialism: A philosophy of commitment. American Journal of Nursing, 66, 500505. Whyte, D. (1994). The heart aroused: Poetry and the preservation of the soul in corporate America. New York: Currency Doubleday. Zerwekh, J. (1994). The truth tellers. American Journal of Nursing, 94(2), 3034. Zerwekh, J. (1997). The practice of presencing. Seminars in Oncology Nursing, 13(4), 260262. Zerwekh, J. (2000). Caring on the ragged edge: Nursing persons who are disenfranchised. Advances in Nursing Science, 22(4), 4761.

Copyright 2006 by F. A. Davis.

C H A P T E R

Grief and Mourning


Philosophical Reections Courage is the letting go Of things that are familiar. Choosing paths where no one else has gone. And though the fear can freeze your soul in woe The only way to go is letting go To give up the familiar.
LYRICS BY FOLKSINGER LINDA ALLEN (1988), WOMENS WORK. CHICAGO: FLYING FISH RECORDS, INC.

Learning Objectives 1. Explain current understanding of grief as not occurring in a predictable sequence. 2. Recall common emotional, cognitive, physical, and behavioral manifestations of grief. 3. Explain the manifestations of unhealthy or complicated grief. 4. Explain the effects of sudden death on survivors. 5. Dene disenfranchised grief, anticipatory grief, and chronic sorrow. 6. Explain the value of mourning rituals. 7. Summarize current research on the value of emotional disclosure to promote resolution of grief. 8. Develop a plan of care that includes normalizing and emotional support.

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One of the keys to reaching out and connecting with people who are dying, as visualized by the trunk of the tree in the End-of-Life Caregiving Model, is understanding grief and caring for those who are grieving. Life involves a continual rhythm of coming and going, achieving and failing, loving and losing, mourning and recovering. This chapter explores current understandings of grief, and caring for those who grieve. Initial sections dene grief-related terminology, frameworks for understanding grief, healthy grief, and complicated grief. The chapter continues by examining the unique aspects of dying suddenly, anticipatory grief, and chronic sorrow. The chapter concludes by considering how grieving individuals may nd comfort in the rituals of mourning and by caring nurses.

INTRODUCTORY DEFINITIONS: LOSS, BEREAVEMENT, GRIEF, AND MOURNING


Many terms referring to the grief process are used interchangeably and have overlapping meanings. Loss occurs when something or someone is missing. Losses associated with death and dying include loss of health and accompanying normal physiological functions, diminishing energy, loss of ability to work at a job or in the home, loss of relationships, loss of hope for the future, and loss of life itself. Bereavement is dened as the experience of loss of a person to whom one has a signicant attachment. Bereavement occurs when a valued person dies. Bereavement is the loss itself, whereas grief is the intense emotional response to that loss. Grief is a universal human response that oods life when security is shattered by loss. Grief reactions are automatic, like a reex, and are expressed according to cultural expectations. For example, a Northern European may be expected to grieve only in private, whereas a traditional Greek public response might include loud weeping. The grief process involves letting go of life and facing the unknown. Grief is experienced emotionally and is accompanied by changes in thought, behavior, social interaction, physical wellbeing, and ability to go about everyday life. For survivors, grieving ultimately involves the process of re-engaging in life. Mourning is the outward expression of grief with other people and in public. For instance, grief expressed through weeping at funerals and memorials is referred to as mourning.

Internet Resource Box See www.growthhouse.org, which offers best of the net sites to understand grief and loss.
WWW.

FRAMEWORKS FOR UNDERSTANDING GRIEF


Whenever we are attached or bonded to another person, activity, or object that we lose, grief is a normal response. Sigmund Freud published Mourning

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and Melancholia in 1917; he introduced the term grief work and proposed that healing occurs when individuals face painful realities. He believed that healing occurred when the individual was able to break ties with those who had died. Freuds ideas were applied to soldiers living with post-traumatic stress syndrome from their ghting in the First World War (Parkes, 2001). Then, in 1944, Erich Lindemann published his study of 101 survivors of a nightclub re in Boston where 500 people died. He vividly described acute grief responses and distinguished between normal and pathological grief, which he attributed to repression of memories of the experience. Like Freud, he believed that therapy should focus on facing painful realities. Many models and theories of grief were proposed in the second half of the 20th century. Grieving as a step-wise process and grieving as a transition process are discussed later. Nevertheless, today we recognize that no two individuals experience grief in the same way and that no single process can accurately describe grief for all people.

Stages of Grief
In the past, the grief response to ones own impending death was explained as proceeding through stages until the person accepted death. This classic explanation was proposed by Elisabeth Kubler-Ross (1969), who observed ve stages often experienced when people are grieving: denial, anger, bargaining, depression, and acceptance. See Box 7-1, Grief According to Kubler-Ross. These psychological reactions made a great deal of sense then and now, and are understood today to be common grief responses. Kubler-Ross depicted these responses as proceeding systematically from one stage to another until acceptance. Although this step-wise process has not been conrmed over the years since she rst described it, there are predictable dimensions of grief, just as she described. In 1970, Bowlby and Parkes described four different stages through which people move back and forth: numbness, yearning and searching,

Box 7-1

GRIEF ACCORDING TO KUBLER-ROSS

DenialConscious or unconscious refusal to accept or believe prognosis. AngerStrong feelings of resentment or blame that are expressed as rage toward family, health-care system, God, or other external forces. BargainingTrying to strike an agreement with God or fate to postpone death in return for a change in behavior. DepressionDeep sadness when the person believes that life will soon be over. AcceptanceA sense of peace and calm that death is imminent.

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disorganization and despair, and reorganization. (Parkes, 2001) They use different words from Kubler-Ross, but describe the same underlying processes.

Planting the Seeds Grief does not progress in one direction through predictable stages. People move into and out of various emotions in a far more unpredictable way. For instance, a dying person might on Monday morning demonstrate acceptance by writing his will and planning his funeral. That same night he might demonstrate denial by talking about returning to his job.

Transition Process of Loss


Bridges (1980) described a transition process that holds true for all losses, including bereavement. The transition from endings to new beginnings has three phases: Ending, The Neutral Zone, and Beginning. To visualize this, see Box 7-2, Bridges Transition Process. Consider the relevance of his framework to the end of life. Ending alone has four aspects: (1) Disengagement involves separation from the familiar and breaking old connections; (2) Disidentication involves losing old ways of identifying oneself; (3) Disenchantment means losing assumptions about how the world works, losing an understanding of the way things are; and (4) Disorientation involves feeling lost and disoriented. Thus, a 56-year-old woman married for 30 years, and newly bereaved, experiences separation intensely, has lost her sense of identity around which she has built her view of the world and herself, and feels disoriented and without direction for her present and future life. After the Ending stage, the woman in our example enters The Neutral Zone as described by Bridges. This is an empty space between endings and beginnings, a gap between old life and new life. In The Neutral Zone, the world is dark and the bereaved is no longer sure that the sun will rise. The woman wakes up in the morning, but has no direction for her day. She is no longer a wife; what meaning is left? How can she organize her time? Her old life plan is gone and she has not yet developed a new plan. In The Neutral

Box 7-2
ENDING

BRIDGES TRANSITION PROCESS


THE NEUTRAL ZONE Darkness and confusion BEGINNING Re-engagement New identity New meaning Reorientation

1. Disengagement 2. Disidentication 3. Disenchantment 4. Disorientation

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Zone, the bereaved cannot make sense of these experiences of disengagement, disenchantment, and disidentication. Beginning again after loss, Bridges third stage involves re-engagement, new identity, a resurgent sense of meaning, and re-orientation. Making a beginning is gradual and may be incomplete, particularly following death of a lifelong partner. The woman in our story ventures back to church, begins to invite friends over for meals, sits down with her adult son to consider her nancial future, moves to a smaller apartment, and eventually decides to nish a college degree in nursing. She is developing a new identity and sense of meaning. Through most of the 20th century, psychologists and therapists believed that beginning again required severing bonds with the deceased in order to make new attachments. It is now understood, however, that it is normal for mourners to hold onto a sense of connection with the deceased (Klass, Silverman, and Nickman, 1996). Some survivors hold onto continuing bonds through inner conversations, memories, dreams, and even a sense that the deceased remains present or occasionally visits. As a result, new beginnings may involve the paradox of letting go of life as it was formerly known yet feeling an enduring connection to the deceased as the bereaved person re-engages in a new way of living. Complete detachment is not necessary for a healthy new beginning.

TYPES OF GRIEF
Grief is an individual manifestation of loss and takes many paths. It is important for nurses to recognize what types of grieving behaviors are healthy and what types are not.

Healthy Grief
Grief is determined by a wide range of factors, including the grieving persons age, sex, mental health, coping skills, relationship to the person who has died, religion, previous losses, current stressors, and quality of support system. Again, cultural rules govern all expression of grief, including feelings, behaviors, and bodily complaints. For instance, among Puerto Ricans, normal grief reactions may include seizures or stupor (Eisenbruch, 1984). Regardless of culture, attachment theory is now considered to be the best predictor of healthy or unhealthy grieving (Shapiro, 2001). Parent-child attachment predicts subsequent bonds to that child throughout life. Adults who had secure and comforting bonds to their parents have the healthiest adult relationships and healthy bereavement in adulthood when those they love die. Adults whose parents were highly anxious, avoided the child, or were disorganized in their parenting have been shown to have more troubled adult attachments and more troubled bereavements. Grief . . . is rooted in the attachments that we make to the people and objects around us (Parkes, 2001, p. 41)

Grief . . . is rooted in the attachments that we make to the people and objects around us (Parkes, 2001, p. 41).

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Box 7-3

NORMAL EFFECTS OF GRIEF


PHYSICAL EFFECTS Insomnia Excessive sleeping Anorexia; nausea Exhaustion

EMOTION Denial of feeling Numbness Anger Guilt

COGNITION Disbelief Disorientation Lack of concentration Difculty problem solving Reduced ability Preoccupation with deceased Disorganization Search for meaning Moments of experiencing presence of deceased Disinterest in daily life

BEHAVIOR Crying, sighing Screaming Reduced activity Withdrawal

Blame Bitterness Despair Depression Loneliness

Cant complete tasks

Trembling Muscle aches Muscle weakness Palpitations Chest pain Shortness of breath Headache

Restlessness Increased or decreased sexual drive

Normal grief affects emotions, thinking, behavior, and the physical body. In North America, manifestations that can be predicted in each category are summarized in Box 7-3, Normal Effects of Grief. Each category is described in more detail in the three subsections that follow. Healthy grief does not usually resolve quickly. Its duration is determined by the strength of attachment to the loved one who has died. Many people experience painful memories, distressing symptoms, and diminished quality of life for years.

Planting the Seeds Grief affects how we feel and think and behave, and how our body functions. Always consider grief as a possible underlying etiology for distressing symptoms that patients describe.

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Emotions of Grief The initial emotion is commonly an absence of emotion, a sense of numbness or denial. This denial of emotion is a natural buffer from overwhelming news and commonly occurs immediately after hearing a terminal prognosis or experiencing loss of a loved one. Denial frequently returns throughout the grieving process. As a short-term coping style, denial protects individuals from overwhelming emotions they may not be equipped to handle. Denial permits engagement in normal, everyday living without continual awareness of death. As a prolonged coping style, denial immobilizes feelings and blocks energy to go forward. Many people deny their own impending death, as do their relatives. Beyond denial of feeling, anger, guilt, and depression are the most common feelings expressed. Anger is a common emotion of grieving. People frequently become bitter and seek to blame someone, including God, loved ones, and caregivers. As anger becomes prolonged, human beings may become estranged from one another. Some people resolve their anger over time, while others never let go of their rage. Anger persists for many reasons. For some people, anger and blame have been a life-long coping style. Others have not been able to recover from abusive relationships, and the death is just one more betrayal. Remember, anger is not rational or reasonable. Guilt is another typical emotion, as angry grieving people turn blame on themselves. Guilt can emerge when an individual has intense regret over past interactions with the deceased person. The individual remembers and nds fault internally. Only now, there is no longer a way to right the perceived wrong. Depression and despair are predictable dimensions of grief. Briey, intermittently, or for prolonged periods, a grieving individual may become immobilized in sadness, withdrawn, and without pleasure, hope, or meaning. Many people discover inner resources to move beyond depression and despair to develop a sense of peacefulness in the face of death. For both the dying and the bereaved, acceptance involves the achievement of emotional tranquility, letting go and trusting that all will be well. Death totally interrupts our sense of control. Acceptance of dying requires relaxing into the process. . . . At the time of death, we may be forced to deal with surrender and trust. . . . We reach the end of our need to control (Smith, 1998, pp. 164165).

Thoughts and Behaviors of Grief Cognitive manifestations of grief may include initial disbelief, confusion, and an inability to concentrate and problem-solve. Everyone knows theyre going to die, but nobody believes it (Albom, 1997, p. 80). For survivors, disbelief usually does not last long because of the striking physical absence of the deceased. However, alterations in thought processes are common. For instance, a survivor may be preoccupied with the deceased while trying to do work. Survivors may encounter sleepless nights, dream of the deceased, or experience his or her presence. Behavior may become restless, withdrawn,

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hyperactive, disorganized, or absentminded, and crying is common. Survivors may also have a difcult time focusing on everyday tasks. Those in mourning may try to avoid all reminders of the deceased or, in the converse, may actively seek out reminders of the deceased. Particularly in teens or young adults, behavior associated with grief may also include hostile acts directed inward (drinking, drug use, dangerous sex) or outward.

Everyone knows theyre going to die, but nobody believes it (Albom, 1997, p. 80).

Effects of Grief on the Body Grief can be somatized in a wide range of bodily complaints. Physical symptoms experienced during bereavement include disturbed sleep, exhaustion, appetite changes, changes in activity, changes in sexual drive, trembling, shortness of breath, heaviness in the chest, pounding heart, headaches, and muscle weakness or aches. Bereaved people are at greater risk of death and diminished physical health in the period immediately after the death. Heart disease is the most frequent cause of higher mortality in the bereaved; thus, there is a literal risk of dying from a broken heart (Parkes, 1999). Research has clearly documented an increased secretion of cortisol, epinephrine, and norepinephrine associated with bereavement. Likewise, immunity is depressed and, in particular, natural killer cell activity diminishes (Hall & Irwin, 2001). These neurological and immunological mindbody effects contribute to the development and progression of disease, particularly cardiovascular.

Complicated Grief
Grief is normal when individuals are able to acknowledge their loss and feel emotionally connected to and trusting of others (Prigerson & Jacobs, 2001). It is normal if they still feel that life holds meaning and are not consumed by anger. Likewise, the grief process is normal if they continue to have a sense of themselves and their own ability to function at work and home. For individuals grieving normally, sadness diminishes over time and they are capable of adjusting to new circumstances and gradually reinvesting in life. Grief is considered complicated when individuals isolate themselves from others, have lost a sense of meaning, are consumed by anger, and fail to invest in life and adjust to new circumstances. Complicated grief can also be called traumatic, dysfunctional, pathological, morbid, abnormal, or unresolved. Grief is considered complicated when the person is so disturbed that function is impaired at home or work or in other social roles. In general, complicated grief is diagnosed when symptoms have lasted for two or more months.

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Symptoms of Complicated Grief Prigerson and Jacobs (2001) have described the results of an expert consensus conference on traumatic grief. The symptoms fall into two categories: Preoccupation with the deceased that impairs function Marked and persistent symptoms, including feelings of futility or loss of meaning, absence of emotional response, feeling dazed, difculty acknowledging the death, self-destructive behaviors, and excessive bitterness or anger Consider how Martha, age 37, is grieving following the sudden death of her twin sister, Maria, 3 months ago. Although both sisters married, they have always lived within one block of each other. Marthas grief is complicated. Her affect is at; she expresses no feelings. Her words and behaviors indicate severe dysfunction. She has stopped bathing and dressing, and she stays in bed most of the day. She has lost her job as an administrative assistant due to absenteeism. Her bitterness and hopelessness are evident in expressions such as, God has taken Maria from me. I hate him. Theres no reason to get out of bed. Im only half a woman now. See Box 7-4, Complicated Grief Assessment, and notice how it applies to Martha. She is angry and bitter, believes life is meaningless, feels that she does not deserve to live, and is not able to function at home or work. One complication of grief that is particularly damaging to the bereaved and to the bereaved persons relationships is called ruminative coping. Literally, to ruminate is to chew over and over. A person who has adjusted to grief through ruminative coping is unable to stop musing about grieving, persistently and repetitively engaging in thoughts and behaviors that maintain a focus on negative emotion (Nolen-Heoksema, 2001). Complicating Factors Grief is more likely to become complicated in the following circumstances, several of which are discussed in more detail: Preexisting mental illness Multiple losses Lack of social support Absence of sustaining spiritual beliefs When dying involved great suffering When coping with multiple other struggles When relationships have been extremely dependent and intertwined When a child has died When death is sudden, particularly from homicide or suicide

SUDDEN DEATH Sudden deaths are one of the clear predictors of complicated grieving. Nurses commonly encounter sudden death. Sudden death encompasses

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Box 7-4

COMPLICATED GRIEF ASSESSMENT

Although there are vast individual differences, experienced therapists have identied patterns across populations that are indicators of unhealthy coping. Determining frequency of troubling feelings and thoughts is vital to the assessment. For each item, does the experience occur several times daily, once a day, several times weekly, or less than once a week? All of these experiences are normal initially and should gradually diminish over time. Thus, it is important to determine how many months have passed since the death. Two months after bereavement, the nurse should refer bereaved people who are experiencing severe impairment of everyday functioning (Question No. 18) and at least six of the following symptoms daily, to professional counselors. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. Overwhelmed or devastated Preoccupation with deceased making it hard to do daily activities Memories of the deceased upsetting Trouble accepting the death. Cant believe it Longing and yearning for deceased Drawn to things connected with deceased Angry about death Feelings of shock and numbness since the death Difculty trusting people Feeling distant from others including loved ones Having same symptoms as the deceased Avoiding reminders that the person is gone Feeling life is empty or meaningless Feeling dont deserve to live now that deceased is dead Feeling bitter since the death Feeling the future holds no meaning Lost sense of safety and control since the death Difculty with functioning at work or home Feelings of being on the edge or easily startled Problems sleeping.

Source: Modied from Prigerson, Kasl, and Jacobs (2001).

short illnesses and trauma, as well as cardiac arrest or sudden infant death syndromeany death where there is little warning. The most traumatic are deaths from murder, suicide, or natural disaster. Survivors of violent death are left feeling profoundly vulnerable, helpless, and angry. Although survivors avoid the burdens and struggles leading up to anticipated death, therapists repeatedly nd that sudden death is hard on survivors who may suffer a variety of dysfunctional symptoms. When a loved

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one dies suddenly, survivors are deprived of anticipatory grieving, which would have allowed them an opportunity to prepare emotionally and to say good-bye. Survivors of sudden death are more prone to the whole range of persistent symptoms seen in complicated grieving, and are more likely to need counseling to resolve their traumatic grief reactions. Survivors are likely to continue worrying about what really happened, to have many questions and regrets. The suddenly dead individual also has had no opportunity to bring closure to his or her life (Lynn & Harrold, 1999). Sudden death leaves practical matters unsettled; relationships, property, and nancial concerns are left to survivors with the desires of the deceased person often unknown. Many people hope that their own death will be sudden rather than prolonged, but it is particularly difcult for the survivors who have had no chance to say good-bye. While sudden deaths are attractive among the healthy, in reality they leave many things undone, and they are often the hardest deaths for families to accept (Byock, 1997, p. 53).

While sudden deaths are attractive among the healthy, in reality they leave many things undone, and they are often the hardest deaths for families to accept (Byock, 1997, p. 53).

DEATH OF A CHILD We do not expect to outlive our children. In a society where most children live to adulthood, it is particularly difcult for survivors to nd meaning in the death of someone so young. Feelings of guilt and blame are predominant (Warden & Monahan, 2000). Parents may believe that they should have done something different to prevent the childs death. They may feel that God is punishing them for past sins. Frequently, they look for someone to blame for the great wrong they have experienced. Relatives and friends may blame the parents for failing to protect their children. The grief of parents and children is discussed further in Chapter 12.

Disenfranchised Grief
Many deaths and other losses cannot be acknowledged or mourned openly, which creates serious difculties for survivors (Parkes, 1999). To be enfranchised is to have rights or privileges. Disenfranchised grief occurs when people die and we cannot publicly declare our attachments; we have no public right to grieve. The relationship might have been an extramarital one, for example. Similarly, when nurses and physicians lose patients, there is no place for us to mourn. Our grief is also disenfranchised. Other losses that cannot be fully acknowledged include fetal deaths, abortions, giving up children for adoption, death of a pet, or loss of a loved one to severe cognitive impairment. In the last situation, for example, the person is still alive but poor cognitive function prevents continuing recognition and relationship. In

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such cases, grief is usually minimized or ignored, there are few publicly acceptable rituals of mourning, and there may be little, if any, social support. This means the bereaved are not permitted any social expression of mourning. They are compelled to grieve alone. In disenfranchised grief, an individual is likely to suppress his feelings rather than acknowledge them. When grief and mourning are denied, physical and emotional symptoms can persist and turn into complicated grief. Grief as the underlying cause of symptoms, however, is often not acknowledged by the bereaved or recognized by health-care providers. The following alternatives may help those living with disenfranchised grief: Small ceremonies with close friends and family to acknowledge the loss Shared meals of commemoration Symbolic burials or burning of clothing or object associated with the one lost, accompanied by prayer, poetry readings, and/or personal statements by survivors Writing journals or letters to the loved one Lighting candles and praying for the one lost

Planting the Seeds Nurses need to nd ways to grieve the deaths of so many patients who die in our care. Some agencies have monthly ceremonies that might involve reading names, lighting candles, tolling bells, or other rituals that have meaning to participants.

Anticipatory Grief
Anticipatory grief is a process that occurs in response to forewarning of lifethreatening illness in oneself or a signicant other. It involves recognizing the loss, reacting to the loss, reviewing and remembering, and letting go of life as it has been known. It is not a process that can fully reconcile a person to loss because it occurs before the reality of death. For survivors, anticipatory mourning can often promote healthy bereavement after their loved ones death (Rando, 2000). In fact, for some people, the mourning after death may be less intense due to mourning that precedes death. The benets of anticipatory mourning include open communication between the dying person and the grieving person, and resolution of unnished business. Nevertheless, it is difcult and confusing for some individuals to mourn when the person they are mourning is still alive. Anticipatory mourning may be benecial in moderating actual mourning, but if it goes on for a prolonged period, it may create additional complications for the bereaved. For example, the burdens of prolonged anticipatory mourning for the survivor may include emotional exhaustion, guilt, anger, and withdrawal from the person who keeps on dying but is not yet dead. The

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mourning persons may feel guilty because they have thoughts about wishing their loved one dead. They may express anger toward the dying person because their own life is being consumed by caregiving without relief. They may withdraw emotionally when they can no longer face the close encounter with their love ones suffering. Edgar Allan Poe described the impact of his wifes repeated cerebral hemorrhages (Corr & Corr, 2000, pp. 224225): Her life was despaired of. I took leave of her forever and underwent all the agonies of her death. She recovered partially and I again hoped . . . the vessel broke again . . . then again. Each time I felt all the agonies of her death . . . and at each accession of the disorder I loved her more dearly and clung to her life. I became insane . . . I drank. . . . I had indeed nearly abandoned all hope of a permanent cure when I found one in the death of my wife. During the process of anticipatory mourning, those who are dying and those who anticipate their death walk a ne line between denial and acceptance. It is common for patients and those who love them to live in two realities so that they might be planning funerals while planning holidays. People with similar experiences may vary dramatically in terms of how much they let in reality and mourn. Denial contravenes anticipatory mourning; it does not allow for saying good-bye, reconciling, and completing nal arrangements of all kinds. The period before death offers many possibilities for human growth and meanings that are lost when denial dominates. However, it is important to try not to force anticipatory mourning. Some people lack the internal resources and do not have the interpersonal support to confront in advance their own death or the death of a loved one (Connor, 2000). Likewise, for many people, family, religion, or culture prohibits overt expression of anticipatory mourning. Box 7-5 contains some fundamental guidelines for support of those who are experiencing anticipatory mourning. When nurses work over time with dying people, they are often able to guide the process of letting go during the period of anticipatory grief. This is discussed in the nal section of this text.

Chronic Sorrow
Many people live in chronic sorrow, living losses that are never-ending without death being imminent (Roos, 2002). Chronic sorrow involves recurring grief reactions when there is a signicant loss of crucial functions in oneself or in another to whom a person has a deep attachment. The loss is never-ending as long as the person lives. Examples of persons coping with chronic sorrow are those living with disability and those caring for them. Chronic sorrow was rst identied in parents with developmentally disabled children. Consider the example of 80-year-old Hannah, who has all of her mental faculties but is gradually declining physically. Diminishing vision due to macular degeneration has led to the loss of her ability to drive. She can no longer read and must now rely on tape-recorded books. A ne tremor of her

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Box 7-5
1. 2. 3. 4.

ANTICIPATORY MOURNING: CARING GUIDELINES

5. 6. 7. 8.

Afrm the value of the person living with dying. Be sensitive to multiple sources of stress and loss. Realize that losses and challenges will change over time. Recognize that dying is experienced in a complex social network, with many people suffering various degrees of anticipatory mourning; help them help each other. Listen actively and pay attention to nonverbals to determine priorities for assistance. Pay attention to losses that are being grieved at the moment. Consider emotional, cognitive, behavioral, and physical effects of grieving and work with an interdisciplinary team. Use the experience to learn about your own humanity and the human condition and to grow in sensitivity to your fellow human beings.

Source: Adapted from Corr & Corr (2000).

hands is preventing her from enjoying her former hobbies of knitting and embroidery, and is making cooking very difcult. Despite joint replacements, walking any distance has become too painful so that outside of her small apartment she must rely on a wheelchair. Despite attendance at an elder activity program and active engagement with her nieces and nephews, she lives in chronic sorrow with the accompanying emotions ranging from denial to anger to sadness to acceptance. Although we as nurses are expected to focus persistently on restoration and maximizing function in those living with such losses associated with disabling illness, it is important to acknowledge the degree of loss experienced and to open the door to expression of grief. We need to listen.

Planting the Seeds As nurses, we also are living with chronic sorrow over our patients suffering and dying. We need to nd ways to mourn and ways to maintain our own well-being through healthy life-afrming choices.

RITUALS OF GRIEF AND MOURNING


Rituals are customary procedures or ceremonies expected within cultural and religious traditions. Rituals of mourning guide the preparation and disposal

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of the body, ceremonies after death, and obligations of the community and family after death. Death rituals prescribe words, symbolic actions, and appropriate behavior of the bereaved (Rosenblatt, 2001). In many cultures, rituals of mourning extend for months or years after the death. To compare just how different death rituals can be in two different cultures, see Box 7-6, Contrasting Funeral Rituals: Vietnamese Buddhist and African American Protestant. In North America, death rituals within the mainstream culture are subdued and less visible than in many places around the world. Historically, North Americans donned black clothing and specied a period for mourning. In America today, survivors are expected to attend a funeral or memorial and then quickly return to business as usual.

Box 7-6

CONTRASTING FUNERAL RITUALS: VIETNAMESE BUDDHIST AND AFRICAN AMERICAN PROTESTANT

AFRICAN AMERICAN PENTECOSTAL AND MISSIONARY BAPTIST FUNERALS Death is believed to involve God calling the person home to the afterlife. The funeral service celebrates crossing over or going home to dwell in heaven. The sermon is likely to call upon sinners to repent and to praise the redeeming qualities of the deceased. Hymns, solos, and choir music reect the rich tradition of black funeral music. Lyrics might include words such as Going home, going home, I am going home or Shes not dead; shes resting in the bosom of Jesus (Irish, Lundquist, and Nelson, 1993). Traditionally, all are invited to a nal viewing of the body in the casket, accompanied by much weeping and expression of distress.
Source: From Abrums (2000); Irish, Lundquist, and Nelsen (1993).

VIETNAMESE BUDDHIST FUNERALS Death is an opportunity for reincarnation, to be reborn into another life cycle. The bereaved wear white clothing, or perhaps simply white headbands or armbands. Services may be at a temple or funeral home. Family members are expected to perform specic rituals. The room is lled with incense and chanting. Traditionally, a large picture of the deceased is on a stand near the casket. Expression of strong emotions is considered inappropriate during prayers, but weeping and wailing are common during the burial itself.
Source: From Dinh, Kemp, and Lasbridge (2000); Irish, Lundquist, and Nelsen (1993).

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ADVANCE PLANNING FOR FUNERALS


North Americans generally attend funerals, which are ceremonies accompanying burial. The funeral parlor or home and the funeral director gure prominently in determining the nature and cost of the funeral and burial. Funeral homes are establishments that have one or more rooms that can be rented for funeral services, including viewings of the deceased in open cofns. Funeral directors are managers of the funeral home, but their roles have expanded to provide religious counsel regarding these matters. Sometimes funeral directors recommend expensive caskets and ceremonies to demonstrate the persons value or relieve the guilt of those who have been emotionally cut off during the persons life. Planning in advance of the death increases the chance of making affordable decisions.

The benets of funerals have been demonstrated over the centuries. Funerals enable survivors to reect on the meaning of the decedents life, draw caring people together in support of each other, and provide a tribute to the deceased. Within a religious setting, funerals or memorials unite everyone in worship and search for meaning. Memorials are formal or informal ceremonies held after the burial or cremation to remember the deceased. In contemporary America, many people reject the notion of a formal service as an appropriate bereavement ritual. In these cases, survivors may hold gatherings that serve as informal memorials intended to draw people together to speak of the deceased and to support each other. A memorial may occur in an apartment with survivors enjoying beer and pizza, in a garden with champagne as survivors spread ashes on beloved roses, or in any other setting where loved ones can gather comfortably and remember.

Internet Resource Box See www.growthhouse.org for information on funeral and memorial planning.
WWW.

CARING FOR GRIEVING PEOPLE


Understanding the bereavement process is crucial for nurses who frequently come into contact with grieving patients and loved ones. Not only will such information assist you in comprehending physical and emotional problems

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that your patients may be having, but it will also help you in your interaction with family members at the end of life. But simply understanding bereavement is not enough. Nurses must also learn practical ways to care for grieving people. Nursing responses to the bereaved include the following: Normalizing the grief process Supporting disclosure while allowing for individual differences Making referrals for complicated grief

Normalizing the Grief Process


In North American society, there are few norms or standards for grieving to help people understand that their symptoms of grief are normal. In the past, and in traditional cultures today, mourning customs permitted the bereaved to suspend everyday obligations for prolonged periods. It was understood that grief prevented full functioning. However, the pace of modern day life simply does not allow for this. People are expected to return to business as usual in 3 days or less, yet they often are emotionally and cognitively impaired by grief and do not realize that their condition is normal. Normalizing is the process of assuring people that their experiences are indeed normal, within the range of what human beings in similar circumstances experience. Refer to Box 7-3 again to reexamine symptoms of healthy grief.

Planting the Seeds It is comforting to explain to grieving people that certain disturbing thoughts, feelings, and physical symptoms are normal during grief. Consider the situation of Thomas, a graduating senior nursing student at City Community College. During the beginning of Toms nal term, his performance evaluation was grim. He was often late for clinical. He couldnt explain the basic rationale for the procedures he was performing and couldnt identify clear nursing goals for his patients. As the instructor was standing by his side while he was preparing an antibiotic for intravenous infusion, she noted that his hands were shaking. This was not the rst time she had noticed this. Stopping him in the middle of the procedure, she asked someone else if she could please complete the task and took Tom into the quiet corner of the report room where they both sat down. Then she inquired, Tom, nothing is going right for you. What is wrong? Tom was hesitant initially but then after awhile blurted out, I think Im going crazy. I cant do anything right any more. She asked Tom to consider if anything had happened since last term, when he was a capable student. In time, he revealed that his twin brother had died in a boating accident about 1 month ago. He hadnt let anyone in the School of Nursing know because I just

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want to get through school. He revealed that he kept missing interstate highway exits, couldnt sleep, and had a constant ache in his chest. He was worried that he might have angina. In response to these revelations, the instructor took time to normalize Toms symptoms. She explained Toms trembling, chest pain, and insomnia as common manifestations of grief. Likewise, she reassured him that his disorientation and inability to problem-solve were normal signs of grief. She referred him for immediate counseling. Another example is that of Madeline and her father. Madelines 58year-old mother died suddenly of cardiac arrest. Her father Fred awoke one morning to nd his wife of 33 years deceased at his side. In addition to grieving his wifes sudden death, Fred encounters Madelines great fury. She blames him for not performing CPR on his wife and repeatedly states, You didnt love her enough Dad. You just let her go. Every time she says this, he feels heart-broken and walks out of the room. Normalizing involves helping Fred and Madeline understand that anger is a normal response to grief. The nurse sits down with Fred and explains, You know, Fred, Madeline is grieving, and anger is a normal emotion for her to express. Fred responds, I know shes just upset with her Moms leaving us, but I feel like shes stabbing me every time she says these things. Fortunately, the nurse also has an opportunity to speak to Madeline. She begins, I know youre really angry about your moms death. Madeline acknowledges this and explains that she feels her father caused her mothers death by not performing CPR. The nurse reects the reality that myocardial infarction caused the death and explains that CPR cannot revive someone who has been dead for hours. Again, she normalizes the anger that Madeline is expressing, yet expresses her concern that if it is prolonged, serious estrangements can occur.

Supporting Disclosure of Emotions


The latest research on grief and bereavement emphasizes that there are enormous variations in healthy grief expression. As previously discussed, we now understand that there are no predetermined stages through which a person must pass. However, throughout the 20th century, since the writings of Freud, psychotherapists have asserted that a grieving person must directly confront feelings and face the reality of loss, review memories, and work toward detachment. These assumptions that grief work is essential have been unquestioned until recently by those working in bereavement therapy. In fact, contemporary research is repeatedly demonstrating that sharing of thoughts and feelings with others does not necessarily reduce the level of distress or facilitate adjustment following bereavement. Likewise, there is no certainty that withholding of feelings is unhealthy. (Stroebe, Stroebe, Schut, Zech, and van den Bout, 2002; Schut, Stroebe, van den Bout, and Terheggen, 2001; Pennebaker, Zech, and Rime, 2001). Strongly encouraging people to

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Box 7-7
MYTH

BEREAVEMENT MYTHS AND TRUTHS


TRUTH 1. It may or may not be good to talk about your feelings. 2. Confronting feelings should not be forced. The value of expression is determined by individual personality, family values, and religious beliefs. 3. Healing from loss proceeds over time whether you express intense feelings or not. 4. It is common to feel a continued connection with loved ones who have died.

1. It is always good to talk about your feelings. 2. Confronting feelings after death is better than avoiding those feelings. 3. You cannot heal following bereavement unless you express intense feelings. 4. Bereaved individuals who continue to feel a connection with their deceased loved ones require therapy for their pathological grief.

Source: Adapted from Wortman & Silver (2001).

open up about their grief can actively contradict personal, family, and cultural rules. The 21st century nurse who cares at the end of life and after death cannot continue to practice according to the bereavement myths of the 20th century. See Box 7-7, Bereavement Myths and Truths. Although sharing feelings does not appear to hasten recovery from acute grief, many people do perceive sharing as comforting and helpful (Pennebaker et al., 2001). Disclosure of feelings enhances memories of the deceased and fosters interpersonal connection. Each individual processes and recovers from grief in a different way.

Planting the Seeds People who choose to share their feelings and experiences of grief often perceive this as helpful. However, research indicates that sharing of feelings cannot be predicted to lessen the intensity of grief. The effective nurse offers to listen, but does not push the bereaved to ventilate emotions.

Nurses offering emotional support for grieving people are best guided to practice presence and active listening. Nurses should acknowledge the

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impending or actual loss and invite expression without forcing it in any way. Here are beginning words that may be helpful with the newly bereaved: I understand you just lost your husband. Would you like to talk about it? Im truly sorry for your loss. How are you doing? I hear you have gone back to work. Have you been able to grieve? Youve been caring for him for years. Have you been grieving all that time? We open the door to expression by naming the grief and being willing to listen. Those grieving choose what and how much to share.

Making Referrals
When grief is uncomplicated, time is the healer, as symptoms gradually subside over months or years. Professional counseling is not needed. Some individuals will benet from sharing through bereavement support groups, which are offered by most hospices as well as other community agencies.

Internet Resource Box See www.rivendell.org for information on Internet e-mail support groups.
WWW.

In contrast to those enduring normal grief, evidence demonstrates that individuals with complicated grief reaction benet from intervention. Bereavement counseling after a sudden traumatic death such as suicide, for instance, and counseling for children who are dealing with sibling or parental deaths has consistently been demonstrated to be benecial. The more complicated the grief process, the more likely referral for therapeutic intervention will be helpful (Schut et al., 2001). Therefore, skilled nursing assessment of grieving individuals is essential. Take another look at Box 7-4, Complicated Grief Assessment. Therapists with grief counseling expertise include social workers, individual and family counselors, psychiatrists, clergy, and those specically trained as grief therapists. The local hospice is usually an excellent source for names of those with the best reputation in the community. Loss and transitions in life cause great suffering, but also provide opportunities for individuals to emerge stronger. New coping skills developed through the bereavement experience can include renewed meaning, enhanced problem-solving, stronger relationships with family and friends and within the community, and enhanced personal resources such as greater self-esteem, independence, compassion, and appreciation of everyday life (Schaeffer & Moos, 2001). Grief can be devastating but it is possible to rise out of it stronger and more resilient.

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CONCEPTS

IN

ACTION

Amy has been the sole caregiver for her 47-year-old husband Tom, who is in the nal stages of a progressive neurological disorder (ALS). He is short of breath and having great difculty swallowing. Tom has chosen not to have a feeding tube or a ventilator. Amy has presented at the clinic with anorexia and weight loss, nausea, and headaches. The work-up for underlying disease is negative. When you sit down with her to understand her personal circumstances, she tells you about Toms circumstances. She condes to you that she is really angry at Tom for being a very demanding patient, and that her caregiving skills are slipping. She describes herself as growing more and more disorganized. She perceives herself as deteriorating mentally. Every time he has an acute episode of respiratory distress, she becomes agitated and forgets what medicine to give him. Identify the name of the grief-related nursing diagnosis for Amy. What evidence supports this diagnosis? What words would you use with Amy to normalize her symptoms? What words would you use to encourage her to express emotions, if she chooses? Imagine that Amy and Tom live in your community. What resources are available in your community to help with the caregiver role strain that Amy is experiencing? What are the limits of the resources available in your community? If Amys grieving becomes complicated (dysfunctional), what grief counseling resources are available in your community?

References
Abrums, M. (2000). Death and meaning in a storefront church. Public Health Nursing, 17(2), 132142. Albom, M. (1997). Tuesdays with Morrie. New York: Doubleday. Bridges, W. (1980). Making sense of lifes transitions. Reading, MA: AddisonWesley. Byock, I. (1997). Dying well: Peace and possibilities at the end of life. New York: Riverhead Books. Connor, S. R. (2000). Denial and the limits of anticipatory mourning. In T. Rando (Ed.), Clinical dimensions of anticipatory mourning (pp. 253266). Champaign, IL: Research Press.

Corr, C.A., & Corr, D.M. (2000). Anticipatory mourning and coping with dying: Similarities, differences, and suggested guidelines for helpers. In T. Rando (Ed.), Clinical dimensions of anticipatory mourning (pp. 223252). Champaign, IL: Research Press. Dinh A., Demp, C., & Rasbridge, L. (2000). Vietnamese health beliefs and practices related to the end of life. Journal of Hospice and Palliative Nursing, 2(3), 111117. Doka, K. J. (2000). Re-creating meaning in the face of illness. In T. Rando (Ed.), Clinical dimensions of anticipatory mourning (pp. 103114). Champaign, IL: Research Press.

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Eisenbruch, M. (1984). Cross-cultural aspects of bereavement: II. Ethnic and cultural variations in the development of bereavement practices. Culture, Medicine and Psychiatry, 8(4), 315347. Hall, M., & Irwin, M. (2001) Physiological indices of functioning in bereavement. In M. Stroebe, R. Hannson, W. Stroebe & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 473492). Washington, D.C.: American Psychological Association. Irish, D., Lundquist, K., & Nelsen, V. (1993). Ethnic variations in dying, death, and grief. Washington, D.C.: Taylor & Francis. Klass, D., Silverman, P., & Nickman, S. (Eds.). (1996). Continuing bonds: New understandings of grief. Washington, D.C.: Taylor & Francis. Kubler-Ross, E. (1969). On death and dying. New York: Macmillan. Lynn, J. L., & Harrold, J. (1999). Handbook for mortals: Guidance for people facing serious illness. New York: Oxford University Press. Nolen-Hoeksema, S. (2001). Ruminative coping and adjustment to bereavement. In M. Stroebe, R. Hannson, W. Stroebe & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 545562). Washington, D.C.: American Psychological Association. Parkes, C. M. (1999). Bereavement: Studies of grief in adult life. Madison, WI: International Universities Press. Parkes, C. M. (2001). A historical overview of the scientic study of bereavement. In M. Stroebe, R. Hannson, W. Stroebe & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 2545). Washington, D.C.: American Psychological Association. Pennebaker, J., Zech, E., & Rime, B. (2001). Disclosing and sharing emotions: Psychological, social, and health consequences. In M. Stroebe, R. Hannson, W. Stroebe & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and

care (pp. 517544). Washington, D.C.: American Psychological Association. Prigerson, H. G., & Jacobs, S. C. (2001). Traumatic grief as a distinct disorder: A rationale, consensus criteria, and a preliminary empirical test. In M. Stroebe, R. Hannson, W. Stroebe & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 613646). Washington, D.C.: American Psychological Association. Rando, T. (2000). Clinical dimensions of anticipatory mourning. Champaign, IL: Research Press. Roos, S. (2002). Chronic sorrow: A living loss. New York: Brunner-Routledge. Rosenblatt, P. C. (2001). A social constructionist perspective on cultural differences in grief. In M. Stroebe, R. Hannson, W. Stroebe & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 285300). Washington, D.C.: American Psychological Association. Schafer, J. A., & Moos, R. H. (2001). Bereavement experiences and personal growth. In M. Stroebe, R. Hannson, W. Stroebe & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 145163). Washington, D.C.: American Psychological Association. Schut, H., Stroebe, M., van den Bout, J., & Terheggen, M. (2001). The efcacy of bereavement interventions: Determining who benets. In M. Stroebe, R. Hannson, W. Stroebe & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 705738). Washington, D.C.: American Psychological Association. Shapiro, E. R. (2001). Grief in interpersonal perspective: Theories and their implications. In M. Stroebe, R. Hannson, W. Stroebe & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care. Washington, D.C.: American Psychological Association. Smith, R. (1998). Lessons from the dying. Boston: Wisdom Publications.

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Stroebe, M., Stroebe, W., Schut, H., Zech, E., & van den Bout, J. (2002). Does disclosure of emotions facilitate recovery from bereavement? Evidence from two prospective studies. Journal of Consulting and Clinical Psychology, 70(1), 169178. Warden, J., & Monahan, J. (2001). Caring for bereaved parents. In A. Armstrong-Dailey & S. Zarbock

(Eds.), Hospice care for children. New York: Oxford University. Wortman, C., & Silver, R. C. (2001). The myths of coping with loss revisited. In M. Stroebe, R. Hannson, W. Stroebe & H. Schut (Eds.), Handbook of bereavement research: Consequences, coping, and care (pp. 405429). Washington, D.C.: American Psychological Association.

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C H A P T E R

Cross-Cultural Competency at the End of Life


Philosophical Reections We must go beyond the familiar Golden Rule, which requires that we treat others as we would want to be treated, and instead treat others as they would like to be treated.
MCGEE, 2001

Learning Objectives 1. Understand the importance of culture and values in patients perceptions of dying, death, and mourning. 2. Learn ways to perform cultural assessments in order to provide culturally competent care. 3. Identify practical strategies for bridging cultural gaps in providing end of life care. 4. Explain specic needs of selected cultural groups with whom nurses have frequent contact. 5. Explore challenges, such as poverty and informed consent, that are exacerbated by the obstacles posed by cultural variation. 6. Identify ways to overcome barriers to providing culturally competent care for marginalized populations.

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Cross-cultural competency is an essential part of the End-of-Life Caregiving Tree; it is essential to connecting with patients and their families. The crown and the trunk reach upward to make connections with an American population that is becoming more and more culturally diverse. As you know, a primitive response to insecurity and unpredictability is to ght or ee. Tragically, this happens too often between nations and between neighbors of different ethnicities. As nurses, however, we cant ght or ee. In fact, we often must assist people who come from backgrounds that are very different from our own. Rather than ghting against beliefs, eeing from calls for help, and opposing actions that we perceive as wrong, each of us needs to nd ways to impart comfort. We can offer care more effectively to people of different cultures by sharpening our curiosity so that we can realize the wholeness of other ways of living or seeing (Bateson, 2000, p. 11). Although each of us may think that our own cultural beliefs dene universal truth, our professional obligation is to listen, to respect, and to try to understand other ways. We must discover what others believe and how that affects the way they would like to be treated. Without losing our own center, we move outside our familiar circle and learn about other truths that dene lives different from our own. We will discover many other ways of living and dying, and through that process we will be able to make better connections with our patients and their loved ones. This chapter addresses cultural identity, the practice of cultural competence, selected end-of-life beliefs of prominent ethnic groups, and cross-cultural issues at the end of life.

IMMIGRATION AND CULTURE


All Americans, except those who are 100% Native American, have ancestors who emigrated from other countries seeking freedom and economic opportunities. Immigration continues in large numbers today. The largest numbers arrive from Mexico, Central America, and South America. In addition, a large proportion of new immigrants were born in Asia, primarily Vietnam, China, India, Korea, and the Philippines. The number of immigrants from the Caribbean and from Eastern Europe is also signicant. All of these groups have different ideas of truth and behavior (Spector, 2000). Culture comprises the beliefs, practices, norms, likes, dislikes, customs, and rituals that we learn from our families and transmit to our children. Much of what we believe and do is determined by culture. Leininger and McFarlane (2002) assert that culture is the blueprint that predicts human motivation and action. Socialization is the process of growing up to acquire characteristics of culture. Acculturation involves identifying with ones traditional ethnic culture while, at the same time, learning about mainstream culture in order to survive. It is important for nurses to determine the degree to which people of a particular ethnic group identify with that group. To what extent is a person tied to traditional heritage and culture? Consistency with ones own ethnic heritage is determined by the degree to which a person has

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Box 8-1

FACTORS DETERMINING ETHNIC IDENTITY

The degree of identication with an ethnic minority group is determined by whether you: Were raised in another country or in America. Were reared in an extended family. Presently stay in contact with extended family. Marry someone of the same ethnic background. Were educated in ethnic or mainstream environments. Reside in an ethnic community. Maintain traditional religious and cultural activities. Interact primarily with people of similar ethnicity. Speak the native language or have limited or no knowledge of it.

been socialized into ethnic or mainstream culture (Spector, 2000). See Box 8-1 to examine factors that determine ethnic identity.

Internet Reference Box To learn more about Leininger and Transcultural Nursing, log onto www.tcns.org/documents/pdf/infopack.pdf.
WWW.

Consider the majority mainstream American culture, largely white and of European background. Mainstream culture, and therefore values, dominates American politics, medicine, and nursing. Mainstream values emphasize personal control, individualism, self help, direct communication, action, and focus on future goals (Wurzbach, 2002). In contrast, many traditional cultures emphasize fate, group well-being, working as a group to help one another, indirect communication, being instead of doing, and the present or the past. Consider the clash of cultures that would take place trying to convince a new immigrant from a traditional culture to: take charge of her symptom management, help herself rather than always relying on her husbands decision, talk to you about her feelings and worries, and actively plan for what the family will do when her symptoms progress and she becomes bedridden. Cultural assessment is the groundwork for understanding. Nurses are challenged in practice: bridging the cultural gaps between their own culture, each patients culture, and mainstream health-care culture. A growing number of American nursing students and nurses are coming from cultures other than the mainstream European American culture. Nurses and nursing students who have strong ethnic identities may have already

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learned to bridge between their own backgrounds and mainstream social and health-care values.

Nurses are challenged in practice: bridging the cultural gaps between their own culture, each patients culture, and mainstream health-care culture.

CULTURAL COMPETENCE
Cultural competence involves having an attitude and developing behavior that permits effective work in cross-cultural nursing situations. Cultural competence at the end of life will increase trust and foster a comfortable, dignied death for the patient. Cultural competence requires a basic understanding of the different cultures that the nurse most commonly encounters.

Cultural Assessment
It is essential to complete individualized assessments of the cultural inuences on a persons life. A cultural assessment guides individualized care planning. Standardized interventions may not be useful and could contradict deeply held cultural convictions. Cultural misunderstanding is a major barrier to providing emotional, spiritual, and physical comfort at the end of life. Box 8-2 outlines major questions that nurses should keep in mind as they interact with clients. Use this outline to assess your own background and to understand other members of the health-care team. Keep these questions in mind as you care for every patient whose cultural background differs signicantly from your own. It will seldom be helpful to ask the questions directly in one session; usually the information will be gathered gradually and indirectly by several members of the health-care team. As you consider the need for cross-cultural assessment, it is important to realize that dying patients and their families may return to cultural values and behaviors of their youth. Communication style varies dramatically between different cultural groups. See Box 8-3. It is very easy to get into trouble through ignorance of cultural rules about greetings, personal space, eye contact, and touch. In traditional cultures, for example, formal greetings, such as Mister, Reverend, and Doctor, are essential to respect. Younger North Americans may be more comfortable with casual rst names. Different cultures have different rules about how far away or close to stand or sit. Some cultures will consider standing close as a threatening invasion of personal space, whereas other cultures consider maintaining distance as an impersonal indication of not caring. Eye contact is forbidden as rude and disrespectful by some cultures, and as essential to developing trust by others. Some cultures strictly prohibit touch between unrelated men and women; others consider a handshake as an essential mark of trust. Clearly, grasping even the most basic cultural mors can make the difference between offending someone and building trust.

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Box 8-2

CULTURAL ASSESSMENT

Where was the person born? How long has the person lived in the United States? Where was the persons family born? How strong is the persons ethnic identity? Who are the persons support people and what is their ethnic identity? How does culture affect decisions regarding treatment? Who makes decisions? How will gender issues affect decision-making and caregiving? What languages are spoken and read? What is the persons educational background? How would you characterize communication style? What does the person believe about the cause and meaning of the illness? What language do they use to discuss it? What can be discussed openly and what cannot? How would the traditional culture treat the illness? How is this consistent with and conicting with mainstream medicine? What foods are chosen and prohibited? What is the role of religion and spirituality at the end of life?
Source: Adapted from ELNEC (2000).

Spiritual beliefs and religious practices are often inseparable from endof-life cross-cultural practices. A brief spiritual assessment is discussed here because it is integral to cultural understanding. Use the mnemonic FICA (Mazanec & Tyler, 2003) to remember to ask about the following concerns: Faith. Ask whether faith plays a signicant role in the persons life. A fundamental question is What gives your life meaning? Inuence. Ask how faith inuences the persons thoughts about experiences with the current illness. How is your faith inuencing the way you are living? Community. Determine whether the person is a member of a faith community and whether the community is supportive. Address. Inquire whether the person has spiritual concerns that she would like to discuss. To whom would she like to speak?

Building Bridges
After performing a thorough cultural assessment, the next step to care effectively across cultures is to bridge the gaps between cultures. Building bridges

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Box 8-3
GREETING

CROSS-CULTURAL DIFFERENCES IN COMMUNICATION STYLE

Always begin by using last name with Mr. or Ms. until further instructed. Inquire as to how the person wishes to be addressed. PERSONAL SPACE Observe the person's reactions to people standing close to them. For some cultures, a certain distance must be observed or the professional is considered to be aggressive. For others, a person who is not close enough might be perceived as uncaring. EYE CONTACT Watch the person's reactions. In some cultures, eye contact is essential for communication to be considered sincere. In other cultures, direct eye contact is seen as rude and disrespectful. The latter view is espoused by most Asian Americans, Native Americans, Arab American women with men, and sometimes Hispanic Americans. Among African Americans, eye contact indicates trust and looking away may signal distrust. TOUCH Observe the person's reaction. In some cultures, handshakes are respectful, and comforting touch of the shoulder or arm is reassuring. In other cultures, touch by strangers is invasive. Touch between men and women is often governed by strong cultural rules. CONVERSATIONAL STYLE Mainstream American style is often frank and straightforward about emotionally sensitive matters such as the symptoms of illness and need for end-of-life discussion. Many traditional cultures require indirect communication about difcult matters. Sometimes difcult issues must be referred to family. When patients look down, smile politely, or nod without speaking, the nurse cannot assume they understand or agree.
Source: Adapted from ELNEC (2000).

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Box 8-4

CROSS-CULTURAL NEGOTIATION STRATEGIES

Ask the patient and family for their understanding of illness and prognosis. Provide clear biomedical explanations in lay terminology. Develop a plan that incorporates both traditional and biomedical approaches. Incorporate helpful and neutral beliefs as patient and family wish. Work collaboratively with traditional healers. Acknowledge any continuing conict between the heath-care team approach and that of patient and family. Keep working toward compromise. Refer the patient if no compromise can be reached and harmful practices continue.
Source: From Tripp-Reimer, Brook, and Pinkham (1999).

between cultures requires sensitive negotiation (Tripp-Reimer, Brink, and Pinkham, 1999). See Box 8-4, Cross-Cultural Negotiation Strategies. The negotiation process involves a continual effort to nd common understanding between medical and cultural approaches to the illness. Negotiation to nd common ground requires time for mutual listening and shared decisionmaking. You will need to be patient and appear unhurried in order to understand and negotiate. Many traditional cultures, for example, require indirect communication about emotionally sensitive matters. Therefore, people who do not believe in straightforward communication are not going to say to you immediately, It is forbidden to speak about dying in front of a dying person! One major role of nursing is to recognize that great diversity exists in beliefs and expected behaviors around illness and dying, to openly address those differences, and to discover ways that beliefs can be incorporated into a palliative plan. Often the nurse can serve as a broker between the patient and other health professionals, interpreting the system to the patient and the patient to the system. For instance, the nurse might explain to the physician that her patient will not complain of pain because he believes that suffering is essential to stay in control, but that the nurse observes his pain to be so severe that he cannot move out of the fetal position. Likewise, a nurse might explain to that patient that his severe pelvic pain can be controlled with opioids and that she has seen other patients with his kind of pain get out of bed and even go to church. Nurses should be searching constantly for mutual understanding and common values. Many traditional customs can be incorporated into the plan of care. Such customs may prove benecial, like singing and chanting

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that have a calming effect on the patient. They may have a neutral effect, such as the use of amulets (a charm worn around the neck, wrist, or waist as a protection against evil). Sometimes you might perceive them as harmful, in which case you need to work with team members to assess the degree of harm and exclude them from the plan of care. For instance, some traditions may practice aggressive use of laxatives and enemas. Will the family accept that this practice is creating more suffering than relief? If not, there may come a time when you have to withdraw from providing care. Most of the time however, sensitive negotiations can lead to compromise and comfort.

Planting the Seeds Cultural ignorance has the potential to cause major mistakes in the provision of care. The culturally competent nurse becomes an invaluable player on the health-care team. The ability to translate patient values to the team and to translate medical values to the patient is a scarce but highly sought-after resource. By focusing on and perfecting skills of cultural competence, nurses become not only indispensable to the health-care team, but trusted partners with patients and families. Practical Tips on Bridging Cultural Differences Here are some suggestions for applying cross-cultural sensitivity to your practice: Consider each patient as an opportunity to learn. Take every opportunity to discover the persons world. Sit down with people and ask them what they believe and want. Be patient with indirect communication. Realize that dying patients may have little energy or ability to be cultural informants. Family and friends may be your major resources for understanding. Develop your ability to explain health-care practices in simple English. Develop your ability to explain the clients world to other members of the health-care team. Incorporate signicant cultural practices into the plan of care.

ISSUES COMPLICATING CROSS-CULTURAL CARE


Several specic issues plague nurses trying to provide culturally competent care: poverty; trust and discrimination; expression and perception of pain; and truth telling and consent.

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Poverty
A disproportionate number of African American and Hispanic families are poor. Immigrant families likewise suffer from higher rates of poverty and unemployment than mainstream Americans. As a result, those with strong ethnic identities are less likely to have health insurance. Throughout the nation, health services for those who cannot afford them are poorly financed. People with little money commonly endure poor health until problems severely disrupt their lives so that they are compelled to present themselves to the emergency department, which treats the immediate symptoms and sends them on their way. Continuity of care to manage a chronic problem like hypertension or diabetes is very rare. Therefore, when a poor minority person presents with end-stage disease, it is often the result of inadequate treatment earlier when cure or good management was possible (Crawley, Payne, Bolden, Payne, Washington, and Williams, 2000). Generally, he or she will have no familiar provider and may be referred to multiple specialists, who are difcult to access and do not communicate with each other. Patients may deliberately stay away because of fear of humiliation and discrimination. They may actually be denied specialist care because they lack insurance that will cover it. Is it any wonder that many poor people of color distrust the health-care system when they are nally told nothing more can be done? At the end of life, nurses have the opportunity to listen compassionately to the stories of impoverished patients who tell us that the health-care system has been of little help to them and now they are dying. At the end of life, we cannot alter the cruelties of the past, but we can do everything in our power to foster respect and quality of life in the last days and months. We can work to build trust with those who have not felt that they could previously trust the health-care system.

Trust and Discrimination


Patients who lack trust and have endured discrimination form a cultural subgroup all their own. Nurses need to be aware of qualities that characterize patients who do not trust us because they have endured signicant discrimination. African Americans, and other minorities who have lived with discrimination throughout their lives, may believe, for example, that withdrawal of aggressive treatment is a way to legalize neglect and abandonment. Having at times been denied the benets of full participation in society during their lives, they are likely to ght for long life even if it means suffering. Therefore, they often refuse Do Not Resuscitate orders, hospice referrals, and advance directives. Refer to Box 8-5 listing African American barriers to palliative care. Fortunately, the Initiative to Improve Palliative End-of-Life Care in the African American Community has been launched to overcome these barriers in the coming years (Crawley et al., 2001).

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Box 8-5

BARRIERS TO EFFECTIVE END-OF-LIFE CARE IN THE AFRICAN AMERICAN COMMUNITY

Lack of accurate knowledge about hospice and palliative care. Lack of communication with health-care providers. Believing that giving up aggressive treatment is giving up hope. Avoidance of end-of-life planning as a dimension of the need to sustain hope. Fear of racism and discrimination in health-care system that leads to inadequate care and premature death. Unsympathetic, blunt health-care providers. Fear that they will not be heard.
Source: From Jackson, Schim, Seely, Grunow, and Baker (2000).

The sufferings of a minority person are compounded if they are living with a stigmatizing disease such as mental illness, drug or alcohol abuse, or AIDS. Issues around trust and discrimination are further compounded if they are homeless or living in a neighborhood perceived as dangerous, if they are survivors of war or torture in their native country, if they have few friends and are estranged from family, and if they have a history of violent behavior or have been associated with criminal activities. They may have deep emotional wounds worsened by whatever is now causing them to die. Working with people living on the ragged edge of society (Zerwekh, 2000) requires breaking through fear to connection with the humanness of the person who has often been forgotten and despised. A nurse describes one such patient: We have HIV patients who are economically challenged. . . . So many people prejudge them based on their economics or culture and so I make sure there are no biases. . . . They still come in with the expectation that they are going to be treated as a lesser class of society. J.J. had a history of substance abuse. He had gained weight, was clean-shaven, was looking for work, was stable, and then he fell hard and went back on the streets. Eventually he was arrested and thrown in jail. His mom called and said, I am afraid he is going to die in jail. I got in touch with the jail and he had developed so many illnesses as a result of not being on therapy for 8 months. . . . He had lesions from head to toe. His hair was falling out everywhere. I put my hand on him for awhile, and he said its so nice to have somebody just touch me because people have been afraid to touch me. . . . Even if its just having my head on their shoulder while I listen to their heart, there is an expression of

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caring that I believe is essential for anybody to be successful. My patients give back to me as much as I give to them. (Condensation of interview with Christopher Saslo, FNP, MSN) Following are suggestions for work with patients who have severe problems with trust and much experience with discrimination (Hughes, 2001): Address them as Mr. or Mrs. unless they request otherwise. Shake hands unless culturally contraindicated (Muslim and Orthodox Jewish men). Make eye contact unless culturally prohibited or the patient reacts negatively. Realize physical contact may be either threatening or comforting. Put yourself in their shoes to try to understand behavior. Do not take insults personally. Do insist on basic respect. Ask for the persons story. Listen. Follow through on promises. Expect noncompliance and do not reject the person. Provide direct material assistance like food and hygiene kits if you are nursing in the community. Never forget your shared humanity. Celebrate small nursing victories. For example, a nurse is working with Fred, a terminally ill alcoholic patient, who is living on the sofa in Harrys trailer. She has come to expect that Fred will not always follow through on medical appointments, that he does not take medication for symptom relief as prescribed, and that he asks for help nding housing and food whenever he has an argument with Harry. She recognizes the need to provide direct material assistance by working closely with the social worker to nd subsidized meals and housing acceptable to Fred, who is used to living alone. She never forgets their shared humanity and states, After all, were all human beings. I treat him like I would my brother. Whenever Fred has a stable living situation and is taking medication regularly to relieve his suffering, she celebrates that small nursing victory.

Planting the Seeds When our patients have lived with poverty and discrimination, its a small nursing victory when they are gracious enough to open the door to us. Its a small victory when they laugh with us. Its a small victory when they are patient with all our paperwork and let us come back again. Its a small victory when they begin to tell us about their lives and worries. Its a small victory if they follow through on one suggestion we have made. Its a small victory when they tell us that the suggestion worked. Its a small victory when they tell us truth-

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fully that our great advice didnt work. Its a small victory when they continue to listen to our suggestions and make one more effort to see if that might work to ease their suffering. Such victories should never be taken for granted.

Pain
Pain experience and pain expression are often determined by culture. Depending on ones culture, pain and other symptoms may be perceived as punishment, as a way to build character, as an indication that the body is ghting back, or perhaps as a spiritual necessity (Mitty, 2001). For some people, eradicating the pain may eradicate an experience that is considered spiritually and culturally necessary at the end of life. For other groups, expression of pain is expected and encouraged. For some, quiet endurance is highly valued.

Depending on ones culture, pain and other symptoms may be perceived as punishment, as a way to build character, as an indication that the body is ghting back, or perhaps as a spiritual necessity (Mitty, 2001).

It is useful to contrast pain beliefs and expression among some of the most common American ethnic minorities (St. Marie, 2002). As always, such generalizations risk stereotyping and are affected by degree of ethnic identity, age, education, sex, and individual uniqueness. African Americans are generally expressive of pain and may be particularly worried about the dangers of addiction. By contrast, Native Americans often do not report pain and seldom ask directly for pain relief. They respect silent endurance. Likewise, Chinese Americans are stoic and may not complain; they fear side effects of drugs. Although Hispanic Americans usually have an expressive style, there can be an expectation of stoicism in the face of suffering (Kemp, 2001). Pain may be perceived as punishment. Hispanics also likely fear addiction. Whenever nurses are working with ethnic minority patients, we need to anticipate differing cultural perceptions and ways of handling pain. We should not stereotype, but should be aware that some people expect themselves to endure quietly whereas others expect to be able to express it loudly when they are suffering. Our pain assessment must be systematic and deliberate before we come to conclusions based on initial assumptions.

Truth and Consent


The United States health-care system values telling the truth about medical diagnosis and prognosis. We believe that people have a right to all pertinent medical information in order to render the most informed decisions about their care. However, the doctrine of informed consent causes many crosscultural dilemmas because not only do views of telling the truth about medical diagnoses vary dramatically, but decision-making practices differ as well across cultures (Crow, Matheson, and Steed, 2000).

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In some cultures, telling the truth is considered harmful, and the degree of truth-telling is the responsibility of family, not nurse or physician. Some Korean and Mexican American patients, for example, are unlikely to want to be told that they are dying and do not want any role in end-of-life decisions. Many cultures assert that speaking about death can bring it closer; this is true across continents in countries ranging from South Africa to Mexico, Italy to China (Mitty, 2001). Consent is a critical issue at the end of life, and presents dilemmas at every turn. Many elders from mainstream and ethnic backgrounds want to have medical authorities make all decisions. Many ethnic people of all ages also defer to authority gures for decision-making. That authority, however, may be traditional leaders and healers rather than the health-care system. For most traditional people, the family is responsible for major decisions. Patient autonomy is not considered liberating; it is perceived as an unnecessary burden that causes loss of hope (Mitty, 2001).

Planting the Seeds Patients should always be asked whether they want to make decisions about their care, or whether they wish to defer to others in authority.

END-OF-LIFE BELIEFS AND BEHAVIORS ACROSS CULTURES


One distinguishing feature between cultures is how they approach dying, death, and mourning. When mainstream Americans are hurting from bereavement, they are expected to move toward greater autonomy and selfreliance. Many nurses possess this orientation, which explains why it is important to be aware that patients come from many different perspectives. Box 8-6 summarizes beliefs and behaviors before and after death of mainstream Americans and seven distinct traditional groups living in the United States. Such summaries can only be snapshot simplications about each group. No matter what the culture, keep in mind that individualized assessment is essential and that stereotypes are dangerous. Cultures are continually evolving and there are many variations among groups and within groups. Moreover, people living within the United States have experienced varying degrees of acculturation, inuenced by age, education, socioeconomic status, employment, and community connections. The following sections describe the experiences of individuals with strong ethnic identities from three cultural traditions: African American, Mexican American, and Chinese American.

An African American Man at the End of Life


Mr. Earl Roberts is a 65-year-old African American married man employed 31 years by the steel industry. Four years ago the plant in his town, employing

Copyright 2006 by F. A. Davis.

Box 8-6

END-OF-LIFE BELIEFS AND BEHAVIORS


BEFORE-DEATH BEHAVIOR Reliance on technological answers Nuclear families often isolated from extended family and community Patient makes decisions Family makes decisions Extended family care Prayer and folk remedies Amulets common Elders may make decisions Caribbean and Louisianan heritage may use voodoo rituals May ask for help from lay healers Family oriented Fear of addiction with analgesics Traditional Chinese medicine Reluctance to complain End-of-life issues not discussed Family makes decisions Family provides care Maintain harmony and balance May use traditional therapies such as acupuncture AFTER-DEATH BEHAVIOR Funeral industry prescribes behavior Limited expression of feelings Bereaved expected to go back to work as soon as possible Prolonged wakes Open displays of emotion Families may want to prepare body Extended grieving Open displays of emotion

BELIEFS ABOUT DEATH


MAINSTREAM

Christian and Jewish Increasing diversity Signicant number of atheists


HISPANIC

Afterlife and resurrection Primarily Roman Catholic

AFRICAN AMERICAN

Primarily Protestant or Muslim Believe in afterlife and Judgment

CHINESE

Primarily Buddhist of many sects Belief in life as cycle of suffering and rebirth

Family stays with and prepares body Controlled emotion Ritual prayers Relatives gather every 7 days

Copyright 2006 by F. A. Davis.

INDIANS FROM INDIA (From Bhungalia & Kemp, 2002)

Hindu Soul reincarnated on 12th day after death

Ayurvedic medicine Belief that suffering inevitable Family members gather Chanting and prayer at bedside Extended family decisions May withhold or openly discuss Traditional healers including herbalists. Strong family commitment to caregiving Turning the body toward Mecca and ritual prayers as death imminent Outside family, strong rules keep men and women apart. No touching Women veiled Traditional healers; herbal remedies Families make decisions Avoid eye contact and aggressive questioning May not report pain Likely to avoid discussing death Herbs and traditional healers

Family prepares body Organ donation prohibited Preference for cremation May control or express emotion Burial at death Highly expressive funerals May be complex rituals to prepare the body Widow does not inherit material goods Public and family funeral Cremation forbidden Family prepares body

WEST AFRICAN: NIGERIANS (Henry & Kemp, 2002)

Muslim or Christian blended with pantheistic indigenous religion involving many gods and spirits Muslim Belief in afterlife

EAST AFRICA: SOMALIANS (From Kemp & Rasbridge, 2001)

NATIVE AMERICAN

Beliefs vary with tribe Christian acculturation

Christian practices May incorporate traditional chanting

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1300 workers, closed. He was recently diagnosed with advanced multiple myeloma and suffers from confusion, nausea, anorexia, and severe bony pain. He is receiving IV uids for his hypercalcemia. He refuses all morphine but will accept an occasional Percocet when he cannot sit or stand due to the pain. His 41-year-old son, Matthew Roberts, a defense attorney in a neighboring state, has arrived at the hospital bedside as you are preparing for his fathers transfer to the local hospice program. The son tells you to leave the room and loudly proclaims, They are not going to give up on Dad! Hes getting every test and treatment they have here! They just want to shove him out of here because he doesnt have any money. They just dont want to be bothered with him. Consider the context of Mr. Robertss circumstances. He and his wife Irna are life-long Bible-based church members. They believe in a better life where they will be going in Heaven and have attended many home going services for friends and relatives. They have a long history of struggle in their own lives. Mr. Robertss ancestors lived in slavery; his family expects him to endure through much physical pain in the battle against death. They are very unsure about accepting hospice care. They perceive entering a hospice as giving up hope, maybe even hastening his death. Mr. Roberts quietly explains, Only Jesus can decide when I go. Ive got to go through the re until he takes me home. Like many African Americans, the Roberts mistrust the medical system. It is true that black Americans are less likely to receive technological interventions for cancer, heart disease, and kidney failure (Crawley et al., 2000; Crawley, Marshall, Lo, and Koenig, 2002; Kagawa-Singer & Blackhall, 2001). They die earlier than mainstream Americans. However, they ght hard to live. They are more likely to request aggressive life-sustaining treatment because they believe that economic or racist motivations are behind clinicians decisions to discontinue aggressive therapy. And sometimes they are right. Their pain relief is worse than relief of mainstream Americans (Crawley et al., 2000; Crawley et al., 2002; Kagawa-Singer & Blackhall, 2001). Refer to Box 3-6, which outlines frequently reported barriers to African American patients receiving comforting end-of-life care. An experienced hospice nurse sits down with Earl and Matthew Roberts. She is familiar with the barriers African Americans experience. She understands that Matthew is opposed to hospice care and knows that she must plan time to listen to this familys story. She knows that she cannot hurry. She asks about Mr. Robertss past and listens attentively, sincerely afrming who he is as a person and his many strengths in the face of difculty. She goes over Mr. Robertss physical condition and interprets the signs and symptoms of disease progression. She explains the limited capability of medicine to alter the course of disease. She goes over the hospice benet and the relief it would provide for Mr. and Mrs. Roberts. She describes the extensive support network offered by hospice and she constantly emphasizes their right to choose. Even if Earl and Matthew Roberts decide to seek more aggressive interventions, they will remember the connection they made with the nurse and perhaps seek hospice care eventually.

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A Mexican American Woman at the End of Life


Sandra Garcia is a 71-year-old immigrant from Mexico who speaks limited English. Two married sons and a widowed daughter live within three miles of her apartment. She has seven grandchildren. Sandra is receiving care through a hospice program connected with a county hospital. She has no health insurance and no doctor. All of her life, she has relied on curanderos, folk healers in her neighborhood, who have been making regular house calls to prescribe her a mix of spiritual and herbal remedies. Two days ago, she presented to the emergency room for severe shortness of breath. Now she has newly diagnosed metastatic breast cancer that has spread to her lungs, liver, ribs, and hips. She will be receiving palliative radiation to the bony lesions and corticosteroids to improve her breathing. She is alert and oriented. Upon entering her room, you nd her wearing a religious medal, ngering Rosary beads, and looking at a large picture of the Virgin Mary on her bedside table. Pictures of nieces, nephews, and grandchildren are also prominently displayed. A consulting surgeon has recommended a right mastectomy to remove the disguring tumor covering her right breast. You, as the nurse, have been trying to talk to Mrs. Garcia about her situation, whether to focus on comfort only or to accept more aggressive treatment, which would have only limited benet. You ask her whether she wants the surgery and she smiles and tells you, My son will talk to the doctor. Her ngers are continually moving along her Rosary beads and she seems distracted. However, you are very conscious of her rights and emphasize, Its your body Mrs. Garcia. You have a right to make the decision! She nods and looks down. You feel frustrated. The next day, her son Juan Garcia has a brief opportunity to speak to the surgeon on the phone. He comes into his mothers room and explains to you that his mother will not have the operation. He explains, The doctor told me it wont help so much. Several family members are visiting. When you ask her about pain, she smiles and says good, good. You are puzzled because you heard from report that she was often overheard moaning during the night. In Hispanic culture, patients often defer to the father or oldest male relative to make decisions that are perceived to be too burdensome for patients themselves. Men are usually the key decision-makers. Extended families gather for support at times of difculty; women are expected to be the primary caregivers. For instance, Juan hopes to take his mother home and his wife Cynthia will be expected to care for her mother-in-law, as well as their three young children. Respect for status and authority often leads families to follow the recommendation of physicians. Health beliefs have strong religious associations and illness is often seen as the consequence of supernatural forces, sometimes punishment from God. Illness is often managed through prayer, religious rituals, herbal remedies, and foods understood to be healing. Lay healers in the community are frequently consulted. The physical and spiritual world are strongly linked. Many Mexicans will deny physical and psychosocial pain, especially in the presence of relatives. Fortunately, Mrs. Garcias family has accepted hospice care. As with African Americans, there are signicant barriers that prevent many Hispanics from using hospice

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services: limited English, value placed on not expressing suffering, expectations that family will assume all responsibility for care, providers ignorance of Hispanic culture, lack of health insurance, recent immigrant status, and lack of program outreach (Kemp & Rasbridge, 2001). A cross-cultural nursing plan of care for Mrs. Garcia should begin with the goals and interventions identied in Box 8-7.

Box 8-7
GOALS

PLAN OF CARE FOR MRS. GARCIA


INTERVENTIONS

Control dyspnea and pain although patient denies both when asked directly.

Frequent attention to shortness of breath and nonverbal pain expression such as moaning. Around-the-clock medication rather than waiting for patient to request medication. Encourage patient to acknowledge distress. Foster verbal communi- Arrange for interpreters. Use assessment cation despite tools and other communication devices patients poor English translated to Spanish. Ensure informed skills. consent. Reduce conict between Serve as bridge between family and health mainstream belief in team to interpret patients desire for patient decision and family to make all decisions. Be sure that patient belief in family patient is given continual opportunity to decision. express preferences. Actively involve family in all decisions. Interpret the family to the health-care system and the health-care system to the family. Prevent spiritual distress. As patient and family request, actively involve hospice chaplain and church priest or other pastoral ministers. Ensure that comforting religious objects are at the bedside. Prevent caregiver role Daughter-in-law will need extensive teachstrain. ing. Ensure hospice home visiting. Interpret anticipated caregiver burdens to Juan and other male decision-makers. Encourage mobilization of extended family. Foster healthy anticipaRespect traditional grieving behavior and tory grief. explain to rest of health-care team.

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A Chinese American Woman at the End of Life


Lillian Chin is a 79-year-old Chinese American woman who emigrated from Hong Kong when she was 19. She is conned to bed and wheelchair at home, with severe chronic obstructive pulmonary disease. Mrs. Chin has been repeatedly hospitalized with pneumonia and twice placed on a ventilator. Your physical examination reveals that Mrs. Chin has bilateral coarse crackles and wheezing throughout her lungs; her apical pulse is 122 and irregular; she has pitting edema toe-to-knee; and there are multiple round red bruises over her back. Her son and his wife, Jim and Alice, are providing care for her in their home. She has said, I never, never will go back to that hospital. Dont let them take me again. A hospice referral has been made and you are completing the paperwork with the Chins. To obtain her consent to services, you read the statement about hospice being provided for people who are dying. The daughter-in-law interrupts mid-sentence and urgently proclaims, Come into the kitchen. I need to talk to you in the kitchen right now. In the kitchen, Jim explains to you, We cant talk about that. Mother understands that this is the end, but we cant speak it out loud. Shell sign the paper but she doesnt want to talk about it. Ill make any decisions that need to be made. That is her wish. Actually, were not sure about hospice. We are a strong family and we care for our own. Traditional Chinese culture avoids direct verbal discussion of sensitive issues. This practice saves face so that the person is not embarrassed by emotions and can maintain her serenity. It is common for the family to withhold information from the patient and for the patient to pretend that she or he does not understand what is happening. The obligation that children will care for parents is termed lial piety. Even with acculturated second generation Americans, hospice assistance must be discussed with great sensitivity so that the family members still feel they are fullling their duty (Kagawa-Singer & Glackhall, 2001). Traditional Chinese healing includes herbs, amulets, acupuncture, bleeding, massage, moxibustion, and cupping (Spector, 2000). Moxibustion, for example, applies heated pulverized wormwood to the skin at certain points of the body. Cupping involves applying small hot glasses on the skin, often the back, to increase local circulation. Both moxibustion and cupping can create marks on the body, which can be misunderstood as manifestations of physical abuse. When applied by skilled practitioners, these healing methods often bring signicant comfort to many people of Asian heritage. A plan of care for Mrs. Chin involves initially addressing the rst priority: relieving her severe dyspnea. The nurse would elevate the head of the bed, ensure that her home oxygen supply is effective, review palliative medications ordered to be sure they are effective and administered properly, call for a new order such as morphine by nebulizer, and arrange for sublingual morphine and benzodiazepine to be available for the family to administer in case of a respiratory crisis. Now you turn your attention to cultural issues. You ask about the bruises on Mrs. Chins back and learn that they are indeed from cups applied

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by a healer in the community. Had you not been culturally competent, you may have strongly suspected abuse by her caregivers. The patient denies that they hurt and says she always feels better when the healer comes. You ask about other practices the healer suggested, and the patient shyly reveals several paper amulets or charms that have been pinned on her clothing. You reassure her and the family that anything that makes her comfortable is good. Since the family requests that they make the decisions and that there be no direct discussion of death-related subjects, you ask permission to ask one question that will then be documented in the hospice records, Do you want to know about your disease and make all the decisions about your treatment, or do you want your family to do that? Mrs. Chin clearly states that she wants the family to know and decide. Then, you assure the family that you will not bring up prognosis and treatment and will speak to the rest of the health-care team about how this will be essential to care for Mrs. Chin. After they agree to hospice services and Mrs. Chin signs, you focus the rest of the visit on teaching this family to care physically for Mrs. Chin at home until she dies. Thus, they will honor her last wish.

CONCEPTS

IN

ACTION

A Native American Man at the End of Life


The 350 Native American tribes in the United States vary greatly in customs and values. For example, the contrast between the Cherokees and the Crows is as great as the contrast between Chinese and English (Irish, Lundquist, and Nelsen, 1993). Thomas Running Bear is a 58-year-old veteran of the Vietnam War, currently living in a large Midwestern city. He grew up on a Lakota Sioux reservation where his sister and two cousins still live. Tom was diagnosed with insulin dependent diabetes mellitus when in the military. Over the years, he has suffered many cardiac and vascular complications. Currently he has a right side below-the-knee amputation and gangrene of his left foot. His heart is failing after two bypass surgeries. He has pulmonary edema that is not responding to diuretics. His breathing is loud and wet. His physician has signed a Do Not Resuscitate order. You learn from a change-of-shift report that a bunch of drunken Indians have been making a lot of noise in his room. We think some of them are smoking dope. You enter the room to nd three men chanting and a stick of dried grass burning. Two women are sitting silently and looking very sad. No one looks at you. You assess Thomas and nd he has no palpable blood pressure. He is having long periods of apnea. One woman looks up and asks, Would you please call Reverend Matthews? (continued)

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CONCEPTS

IN

ACTION

(CONTINUED)

The Lakota Sioux are the second-largest American Indian nation (Irish, Lundquist, and Nelsen, 1993). As is true with most other Native American tribes, end-of-life rituals often include both tribal and Christian practices (Irish et al., 1993). Respect requires avoiding eye contact and maintaining a respectful distance. Native people are particularly vulnerable to the destructive effects of alcohol, which was not used until Europeans settled in North America. Because of the high incidence of alcoholism, health-care providers can easily stereotype them as alcoholics, which the nurses did during the change-of-shift report. How might you comfort Mr. Running Bear? How can you come to understand the family behavior? How would you approach the family? What words would you say to the family? How could you explain the family to the health-care team? How might you express your respect to the family?

References
Bateson, M. C. (2000). Full circles, overlapping lives. New York: Ballantine. Bhungalia, S., & Kemp, C. (2002). (Asian) Indian health beliefs and practices related to the end of life. Journal of Hospice and Palliative Nursing, 4(1), 5458. Crawley, L., Marshall, P., Lo, B., & Koenig, B. (2002). Strategies for culturally effective end-of-life care. Annals of Internal Medicine, 136(9), 673679. Crawley, L., Payne, R., Bolden, J., Payne, T., Washington, P., & Williams, S. (2000). Palliative and end-of-life care in the AfricanAmerican community. Journal of the American Medical Association, 284(19), 25182521. Crow, K., Matheson, L., & Steed, A. (2000). Informed consent and truth telling: Cultural directions for health care providers. Journal of Nursing Administration, 30(3), 148152. ELNEC (End-of-Life Nursing Education Consortium). (2000). Cultural considerations in end of life. Washing-

ton, DC: American Association of Colleges of Nursing. Henry, D., & Kemp, C. (2002). Culture and the end of life: Nigerians. Journal of Hospice and Palliative Nursing, 4(2), 111115. Hughes, A. (2001). The poor and underserved. In B. Ferrell & N. Coyle (Eds.), Textbook of palliative nursing (pp. 461466). New York: Oxford University Press. Irish, D., Lundquist, K., & Nelsen, V. (1993). Ethnic variation in dying, death, and grief: Diversity in universality. Washington, DC: Taylor and Francis. Jackson, F., Schim, S. M., Seely, S., Grunow, K., & Baker, J. (2000). Barriers to hospice care for African Americans: Problems and solutions. Journal of Hospice and Palliative Nursing, 2(2), 6572. Kagawa-Singer, M., & Blackhall, L. (2001). Negotiating cross-cultural issues at the end of life: You got to go where he lives. The Journal of the American Medical Association, 286(23), 29933001. Kemp, C. (2001). Culture and the endof-life: Hispanic culture (Mexican

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American). Journal of Hospice and Palliative Nursing, 3(1), 2933. Kemp, C., & Rasbridge, L. (2001). Culture and the end of life: East African cultures: Part I, Somali. Journal of Hospice and Palliative Nursing, 3(2), 5961. Leininger, M., & McFarland, M. (2002). Transcultural nursing: Concepts, theories, research and practice (3rd ed.). New York: McGraw-Hill Companies. Mazanec, P., & Tyler, M. K. (2003). Cultural considerations in end-oflife care. American Journal of Nursing, 103(3), 5058. McGee, C. (2001). When the golden rule does not apply: Starting nurses on the journey toward cultural competence. Journal for Nurses in Staff Development, 17(3), 105112. Mitty, E. (2001). Ethnicity and end-oflife decision-making. Reections on

Nursing Leadership, 27(1), 2831, 46. Spector, R. (2000). Cultural diversity in health and illness. Upper Saddle River, NJ: Prentice-Hall. St. Marie, B. (2002). Core curriculum for pain management nursing. Philadelphia: WB Saunders. Tripp-Reimer, T., Brink, P.I., & Pinkham, C. S. (1999). Cultural brokerage. In G. Bulechek & J. McCloskey (Eds.), Nursing interventions: Effective nursing treatments (pp. 637649). Philadelphia: WB Saunders. Wuzbach, M. E. (2002). Community health education and promotion. Gaithersburg, MD: Aspen. Zerwekh, J. (2000). Caring on the ragged edge: Nursing persons who are disenfranchised. Advances in Nursing Science, 22(4), 4761.

Copyright 2006 by F. A. Davis.

U N I T

F O U R

ETHICAL AND SPIRITUAL PRACTICES

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Philosophical Reections It has become increasingly clear that the ability to prolong life has outpaced medical, philosophical, bioethical, and societal efforts to reach a value-based consensus on the goals of and criteria for care. . . . Ethical dilemmas on macro- and micro-levels emerge daily as the debate on extending life versus postponing death continues.
KAREN STANLEY AND LAURIE ZOLOTH-DORFMAN, 2000

Learning Objectives 1. Explain the importance of nurses questioning the ethical implications of interventions that they are expected to implement at the end of life. 2. Explain the relevance of compassion and courage in end-of-life ethical practice. 3. Dene the end-of-life relevance of ethical duties, including benecence, nonmalecence, autonomy, veracity, delity, and justice. 4. Describe the impact of utilitarian ethics at the end of life. 5. When families are in conict at the end of life, explain how a focus on care ethics fosters resolution. 6. Discuss the limits of advance directives and the advantages of the healthcare power of attorney. 7. Explain the principles that a health-care surrogate is expected to use to make decisions when the patient has lost decisional capacity. 8. Describe the circumstances of social injustice at the end of life. 9. Dene futility, proportionate good, and ordinary versus extraordinary treatments. 10. Contrast the ethical implications of withholding and withdrawing therapies. 179

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11. Discuss the end-of-life benets and burdens of antibiotics, food and water, turning, and positioning. 12. Contrast active euthanasia and assisted suicide, and explore associated ethical issues. 13. Discuss the ethical implications of withdrawing life-sustaining interventions for patients in persistent vegetative states. Ethics is a process of reecting on moral beliefs, and bioethics refers to the study and analysis of ethical issues that arise in the elds of health care and biological sciences. Nursing ethics comprises one dimension of bioethics. This chapter addresses the challenges of nursing ethics at the end of life. Ethical and Spiritual Caring represent one branch of the End-of-Life Caregiving Tree; both involve the search for meaning and acting in a manner that is consistent with the deepest human values. This chapter begins by acknowledging that nursing at the end of life often poses striking ethical challenges. The chapter explains the fundamentals of ethics based on virtue, duty, consequences, and relationships. It also discusses in depth end-of-life challenges regarding autonomy and avoidance of killing.

NURSING IN THE MIDDLE


To nurse at the end of life, you need to become conscious of how value-laden the choice of medical and nursing interventions can be. We practice in the middle of an ethical mineeld. Even the most ordinary nursing measures, such as turning, feeding, and bathing, can elicit ethical conicts. Physicians, families, patients, and a combination thereof make decisions. Nurses are often the ones asked to carry out their value-laden choices. Nurses remove the tubes and lines and administer the morphine. Sometimes, without discussion, physicians order us to intervene in ways that may end life or cause permanent unconsciousness (Schwarz, 1999). Nurses can become the delegated providers of assisted dying. These decisionsmade by othersinict on us signicant moral turmoil. Nurses experience moral distress when they are unable to translate their moral choices into moral action or when they feel that nursing virtues are undermined (Volbrecht, 2002).

Naming and clarifying ethical issues is a prominent nursing role at the end of life.

We can learn to manage and avoid moral distress by dening an issue as having ethical implications, analyzing conicting moral obligations, and participating in meaningful collaborative dialogue to reach an ethical solution. Naming and clarifying ethical issues is a prominent nursing role at the end of life. Nurses witness patients lives and hear their concerns. To mitigate our own moral distress and practice our caring role as nurses, we must continually guide the focus of the interdisciplinary team to emphasize what is good for the patient and those who love him. We must strengthen our voices

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and ask, Is what we are doing good for this person and family? Is this what the person wants? We cannot stay silent. Speaking out requires us to develop the virtue of moral courage. Often nurses feel morally uneasy about implementing specic therapies, but we are uncertain how to put our moral distress into words. This chapter will help the reader to identify the issues and articulate the questions specic to each patients situation. It is helpful to be guided by ethical frameworks.

We must strengthen our voice and ask,Is what we are doing good for this person and family?

ETHICAL FRAMEWORKS
Ethical decision-making is guided by a persons character or virtue, adherence to dened moral duties that respect human beings as persons, consideration of the consequences of decisions, and honoring relationships and the context of ethical decisions.

Virtue Ethics: Decisions Determined by Character


Aristotle described virtues as habitual patterns of perceiving, feeling, and behaving (Volbrecht, 2002). Virtues are strengths of character. For example, compassion and the courage to speak out are virtues that are central to effectively care for the dying. Compassion includes empathy, a deep sense of shared humanity, and a disposition to comfort and relieve suffering. Moral courage is necessary to question physician or institutional authority. The practice of virtue ethics integrates character and action. It posits that a person does the right thing because she cares deeply about it. Moral character is developed through mentoring by expert clinicians and peers. Ethical decisions are made based on critical reection and ongoing dialogue about ethical issues as they are presented in the clinical setting. An important dynamic in critical reection is the examination of ethical obligations as they have been dened by ethicists.

Moral Duties Based on Respect for Persons


Whereas a pure interpretation of virtue ethics emphasizes that a person will make a good decision because of her well-intentioned moral character, contemporary health-care ethics asserts that good decisions should be guided by fundamental ethical duties that require respect for persons. The obligation to respect each person emphasizes essential moral duties or principles: doing good, avoiding harm, respecting freedom of choice, speaking truthfully, being loyal, and promoting justice. Laying the groundwork for further discussion, each of these duties is briey described here, including the name of the ethical principle identied. Consideration of these fundamental ethical duties should guide all ethical decisions.

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Doing Good (Benecence) Benecence involves simply doing good for others. At the end of life, beneficence is expressed through attentive listening, knowing the patient as a person, inquiring about well-being, and persistently trying to relieve suffering. Caring actions are a manifestation of benecence. It is vital to patient wellbeing that nurses ask themselves whether their actions are truly doing good. So often fear actually prevents nurses from doing good. For instance, we might fear relieving suffering because stopping to listen carefully exposes our own vulnerability (Zerwekh, Riddell, and Richard, 2002). Or, we might fear comforting because we are afraid that medicating to relieve suffering will kill the patient. Or we might fear the anger of those in authority if we ask too many questions about how the medical regimen is beneting the patient. Benecent nursing practice at the end of life requires courage to confront our own fears. If a nurse is afraid to listen to a patient talk about how much he is hurting, the nurse will not be able to assess and relieve his pain. If a nurse is afraid to call the physician to request more pain medication, she will not be able to relieve pain. Such fears render us unable to practice benecence.

Benecent nursing practice requires courage to confront our own fears.

Avoiding Harm (Nonmalecence) Nonmalecence, the inverse of benecence, is avoiding causing emotional and physical harm. It also involves an effort to foresee harms that might not at rst be obvious. It includes the mandate to avoid killing and to prevent suffering. The moral requirement to do no harm has generated great controversy in end-of-life care because of the debate about medical decisions that may cause death. Alternatively, how do we fulll our obligation of nonmalecence when we are obligated to prolong life regardless of suffering? In the everyday world of nursing practice, nonmalecence should play heavily into our decisions about whether to cause suffering at the end of life with common nursing actions like vigorous wound care, suctioning, turning, blood drawing, forcing uids, forcing mobility, and performing frequent vital signs. Fear can lead nurses to cause harm because we feel powerless to question physicians orders or the authority of an institution.

The moral requirement to do no harm has generated great controversy in end-of-life care because of the debate over medical decisions that may cause death.

Respecting Freedom (Autonomy) Individual liberty or self-determination is highly regarded in American society and in health care. The practice of requiring informed consent for medical intervention reects this respect for autonomy. Autonomy was not emphasized in the United States until the latter half of the 20th century, however.

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Before that, the Hippocratic tradition and oath, dating from around the fth century B.C.E., emphasized paternalistic benecence as the highest moral ground. Physicians believed they knew what was best, and patients were expected to comply without question (Veatch, 2003). This tradition still inuences medical practice around the world. As a person dies, he loses the capacity to make his own decisions. This inevitable loss of autonomy presents signicant end-of-life ethical challenges as clinicians and family members must take over decision-making for the patient. Traditional cultural perspectives on what is the right or wrong action at the end of life often diverge signicantly from mainstream American bioethical emphasis on individual freedom. Chapter 8 examines dying from a cross-cultural perspective. Speaking Truth (Veracity) Veracity is fundamental to ethical relationships. Speaking truth involves avoiding lying, deception, and fraud. Multiple studies have revealed that most Americans want to know the truth about their illness and prognosis (Glass & Cluxton, 2004). Self-determination is not possible without knowing the truth. Patients from traditional cultures may choose not to be told the truth about their illness. In that case, they should be asked what they wish to know. If they refuse to hear information about illness and prognosis, they need to identify someone else to receive that information and make decisions. Loyalty (Fidelity) Fidelity involves establishment of a trusting nurse-patient relationship. Fidelity is usually achieved by persistence over time. But even brief nursepatient encounters should be marked by trust. In a nurse-patient relationship, delity is the opposite of abandonment, neglect, and abuse. Fidelity at the end of life requires all clinicians to confront their own fears to develop and maintain trusting relationships with those near death. Respecting Equality (Justice) Respect for justice involves treating people fairly and without discrimination. Social or distributive justice requires fair distribution of community resources, a difcult ethical mandate in contemporary United States health care, which is characterized by a great contrast between health and health resources of the rich and poor. The poor die sooner and are less likely to receive hospice and palliative care (Williams, 2004).

Utilitarian Ethics: Focus on Consequences


Utilitarian thinking also inuences contemporary American health-care ethics. Utilitarian thinking focuses on the consequences or outcomes of a decision. Social utilitarian thinking considers actions to be right in proportion to

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their ability to promote the greatest good for the greatest number of affected people. Utilitarian thinking applies to decisions about individual treatment when weighing the benecial and burdensome consequences of treatment. This decision-making framework considers the benecial consequences in determining whether or not an intervention should take place. Benet/ burden analysis is often used in end-of-life ethical decision-making to examine the anticipated consequences of a decision. One problem with this thinking framework is that individuals differ on what they believe to be a benecial consequence. Consider a social utilitarian perspective on extending the life of profoundly incapacitated individuals who cannot live without expensive medical regimens. A utilitarian perspective leads to questioning whether there are enough benets for society to sustain their lives when the cost burdens are great. A growing number of facilities house children and adults who cannot swallow or breathe on their own. Inexpensive, fatal conditions have been turned into expensive, chronic conditions (Callahan, 1998). Social utilitarian thinking asks us to weigh the benets (more people are alive) and the burdens (cost of their care). Utilitarians look at the consequences to society. They assert that medical successes are turning into social hazards as medicine consumes ever more resources, which then are not available to fund other social needs, such as feeding and educating our children.

Care Ethics: Decisions Determined in Relationship


Beyond the language of conicting duties and consequences, feminist and caring theorists have proposed a relational ethics of care to guide nursing practice (Volbrecht, 2002). Care ethics focuses on moral decision-making attentive to the context of relationships. Conicts are resolved in ways that preserve community, family, and connection. Ethical decisions must always consider context of the decision and the well-being of caregivers as well as the patient. Care ethics emphasizes that patient and nurse are all part of one community. Such thinking stands in dramatic contrast to assumptions that human beings are intrinsically separate, and that autonomy is the highest moral imperative. Family Good and Family Harm Contemporary health-care ethics focuses primarily on what is good for the individual, and sometimes on what is good for society. The individual, however, lives in context of the family. A purely individualistic focus ignores the consequences of decisions made and gives little regard to family well-being. In fact, the family and other loved ones are intensely involved when a family member is dying. The patient is in fact the patient-in-relation (Ladd, Pasquerella, and Smith, 2000, p. 105). Respect for patient autonomy requires that the nurse ask the patient-in-relation to dene what role he wants the family to have in decision-making. The needs of the family must be balanced with the needs of the suffering family members. It is vital that conicts

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between patient and family needs be identied and carefully weighed, sometimes by the gathered health-care team and sometimes through ethical consultation. Consider conict of needs in the following situations: A familys need to ensure food and shelter for themselves leads to neglect of a patients comfort and safety. A familys desire that the patient remain alert as long as possible leads to failure to give sedating medication to relieve suffering. A family over-sedates the patient to avoid demands for care. A family desires to reduce its burden and accelerate dying by refusing all life-prolonging therapies for a family member. A family desires to prolong dying by insisting on all life-prolonging therapies. A family insists on a treatment that it believes will be helpful, although such treatment is known to be burdensome for the patient. Examples are oral suctioning and high volume hydration. Families are divided with some members wanting aggressive care to continue and others choosing palliation. In the home environment, burden/benet analysis must consider the impact of caregiving on all involved. Caregiver burden can involve lost schooling, lost income, lost relationships, and lost health. Ethical decisions should consider the limits of family obligation and how community resources can be mobilized to relieve caregiving burden. At the end of life, it is particularly important that the family and other loved ones be considered in all ethical decision-making. When there is conict regarding life prolongation or palliation, the nurse, in close collaboration with social work and clergy, seeks to listen attentively, discover common ground to focus on the well-being of the dying person, and work out solutions where there is mutual agreement. Care ethics focuses on maintaining the delicate web of human relationships. When values collide, care ethics requires that nurses develop strong skills of mediation and conict resolution to discover solutions that preserve human relationships. Family and loved ones must be refocused on considering the best interest of the patient. Help them listen to each other and look beyond opposed positions to discover shared and compatible values.

When values collide, care ethics requires that nurses develop strong skills of mediation and conict resolution to discover solutions that preserve human relationships.

CHALLENGES IN ETHICAL DECISION-MAKING


This section explores three types of ethical challenges commonly faced by nurses caring for patients at the end of life: respecting autonomy, fostering social justice, and avoiding killing while relieving suffering. It puts into practice the decision-making frameworks and principles discussed earlier.

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Challenges to Respecting Autonomy at the End of Life


The liberty of the individual has dominated American health-care ethics since the 1970s (Veatch, 2003). Patients are expected to determine what is best for themselves. Authority lies in the individuals decision. For a person to act autonomously he must have truthful information, be free from controlling inuences, and possess the capacity to make deliberate decisions (Ersek, 2004). There are many challenges to this ideal at the end of life, which pose ethical dilemmas for nurses and other health professionals. Challenges include uncertain and denied truth, informed consent, decisional capacity, noncompliance, advance planning, and surrogate decision-making. Despite these challenges, however, nurses should play an active role in promoting autonomy at the end of life.

Uncertain and Denied Truth The truth about disease and prognosis always has an element of uncertainty. Contemporary treatment can signicantly prolong life. Nevertheless, the reality of dying must be addressed with people with advanced life threatening illness. Denial of difcult truths is a common defense mechanism for patients, families, and professionals. In addition, family, physician, or other health team members may sometimes believe that being completely honest may cause more harm than good. Misinformation or actual deception is common (Glass & Cluxton, 2004). It is common for providers to disclose only incomplete information, while emphasizing the positive aspects. Providers may redirect questions to focus on encouraging information. Without complete information that includes their terminal condition, patients are unable to make decisions about their last days. Autonomy is denied. Consider the following example: An oncologist for a patient with prostate cancer metastasized to the brain, liver, and bone says to the patient: Oncologist: Your scans are looking good. There are no new lesions in your brain. Liver enzymes are coming down. Weve got the pain in your pelvis under control. Youre in good shape. Patient: I dont feel like Im in good shape. You know, doc, I keep losing weight and Im so tired. Oncologist: Well, there is a new clinical trial that looks promising. Patient: No, no doc. I want to die with my hair on! Do you think Ill make it to Christmas? Im thinking of asking my whole family to come home one last time. Oncologist: Well, Dr. McNamara has a real promising clinical trial going on over at Memorial Medical Center. Lets call him. Thus it happens that by hedging on the truth a physician encourages the patient to focus entirely on medical treatment and the patient loses the opportunity for self-determination in his last days.

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Nurses support such deceit for many reasons, including concern about contradicting the physicians optimism, difculty facing mortality, failing to overcome personal fears in order to have honest conversations, making assumptions that people really do not want to know the truth, believing that the only way to help is to focus on cure, and being unable to grieve their

Box 9-1

TRUTH-TELLING STEPS

1. Ask difcult questions. Example: What did your doctor tell you about how serious your illness is? 2. Time your questions by watching for verbal and nonverbal cues that the patient desires discussion. When the patient turns away or changes the subject, respect that. 3. Balance what you know to be true with what the patient can accept. 4. Respect patient and family avoidance. 5. When patients desire open discussion, let go of encouraging words about prognosis. Follow the patients lead. 6. Remember that some cultural and religious traditions require that terminal prognosis be withheld from the patient.
Source: From Zerwekh (1994).

Box 9-2

STEPS IN ENCOURAGING CHOICE

1. Follow the steps of truth-telling. 2. Bring up the possibility of choice about treatment options and how they want to live the rest of their lives. 3. Encourage the patient to recognize his own needs. 4. Translate medical information into human terms. 5. Question the patient regularly to discover his or her desires and clarify options. 6. Propose a trial-run of choices about which the patient is unsure. The trial might include a living arrangement or a palliative treatment. 7. Help family communicate with one another. Listen and try to help members nd common ground. 8. Respect the choice not to choose. Remember that cultural and religious traditions may require that family or medical authorities are the decision-makers.
Source: From Zerwekh (1994).

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patients dying (Glass & Cluxton, 2004). Perhaps the most prominent rationalization for avoiding truth-telling is the fear of taking away hope. But hope can come in different shapes and sizes. At the end of life, realistic hope evolves beyond desire for a cure to hope for pain-free days and visits from friends. Ultimately, the hope shifts to the possibilities for reconciliation and meaning. Nurses foster autonomous decision-making by telling the truth and encouraging choice (Zerwekh, 1994). Box 9-1 identies the steps of truth-telling and Box 9-2 identies the steps for encouraging choice. It is only through telling the truth that patients have enough information to make informed choices. A hospice nurse expert explains this ongoing process of encouraging choice with one patient: Everything became a decision. He couldnt swallow. Should he have TPN? We spent our time talking about what that meant. He decided to nish his PhD. We had to organize the bedroom so he could set up his computer. He thought about whether he wanted to kill himself, but he decided he had some more to do. He was hesitant to take pain meds. That was the way it went, trying to give him total control. When he needed several dressing changes, I gave him one dressing that he was in charge of and I was in charge of the other (Zerwekh, 1994, p. 33).

Noncompliance It is important for nurses to understand that patients have many reasons for being noncompliant with benecent medical and nursing recommendations. Their noncompliance often has nothing to do with impaired decisional capacity. They may alter their prescribed regimen because they cannot afford it, do not understand it, or nd the side effects intolerable. Likewise, they may: nd the regimen to be too intrusive or stigmatizing, seek to avoid chemical dependence, or desire that the illness not take control of their life. Respect for patient autonomy requires that nurses inquire deeply to understand patient decisions and to work with them to develop acceptable palliative regimens. Informed Consent In order to make an autonomous decision, a patient must possess and understand the necessary information relevant to that decision. The doctrine of informed consent has two dimensions (Glannon, 2005). First, the physician is expected to truthfully disclose diagnosis, prognosis, treatment possibilities, risks, benets, and consequences of accepting and refusing treatment. Second, the patient must have the mental capacity to understand this information and the consequences of accepting or refusing. Without extensive study of medicine, it is not possible for a patient to understand certain complexities of medical information; the patient can comprehend only a health

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professionals translation of that medical information into lay terms. Physicians often explain medical information incompletely and with an emphasis on the positive. Patients do not necessarily receive the objective information needed to make a truly autonomous decision. In addition, a severely ill patients ability to comprehend life and death information is compromised by emotional stress and physiological impairments. The nurse frequently ends up asking the patient to sign papers indicating informed consent, and often is asked to witness this process. Sometimes she must question whether the patient comprehends the decision he is making and whether he possesses the mental capacity to decide.

Decisional Capacity The ability to make reasoned decisions is called decisional capacity or competence. Patients with decisional capacity have the right to refuse all lifesustaining treatments, such as resuscitation, articial ventilation, food, uids, blood, dialysis, chemotherapy, surgery, or antibiotics. Such decisions may cause great distress on the part of family and caregivers, who may seek to deny that the person is in her right mind. When the patient who is not cognitively impaired refuses life-saving intervention or chooses a physically harmful course of action, respect for patient liberty prevails. In such situations, the nurse listens with compassion to the patient and those who care for her. Some people have a strong drive to control their own destiny, and those who love and care for them must let them die without intervention. Decisional capacity usually deteriorates at the end of life, due to both disease and medication. Evaluating decisional capacity entails asking the following (Dalinis, 2005): 1. Can the person understand and communicate information? 2. Is the person able to reason and deliberate about a decision? 3. Can the person identify personal values and goals? When a patients decisional capacity is impaired, family members or legally appointed surrogates make decisions in the patients stead. At some point, individuals, who have always been in charge of their own lives, and sometimes in charge of the familys life, can no longer be trusted to make good decisions. Families then need to be taught that the disease has advanced to the point where it has impaired their loved ones thinking. This can be a difcult transition in a family used to doing whatever mother says. Strategize with the caregivers and other members of the health-care team about changing roles and responsibilities and about ways to preserve their family member from harm. When autonomous decisionmaking is no longer possible, patients must be protected from their own unsafe decisions as caregivers take over control. Nevertheless, a great effort should always be made to respect reasonable autonomous decisions while protecting the patient from harmful decisions.

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Advance Planning When a person makes and records a decision about limiting end-of-life treatment options when he still has decisional capacity (legally competent), he anticipates that health professionals will respect that decision when he becomes incapacitated (legally incompetent). Through the ethical principle of autonomy extended, an advance directive, often called a living will, can be written in which a patient denes his end-of-life wishes. In addition, a competent person can appoint a proxy or surrogate decision-maker to make a substituted judgment based on the patients values (Veatch, 2003). Either way, the patient is seeking to safeguard his ability to make an autonomous decision. Box 9-3 contains a glossary of the complex language used in reference to advance planning.

Box 9-3

THE LANGUAGE OF ADVANCE PLANNING

Advance care planning: Identifying wishes for specic treatment in anticipation of a time when the person will be unable to make decisions. Advance directive: Statement made by a competent individual about preferences for future treatment. Best interests: A health-care proxy or substitute is expected to make decisions for an incompetent person based on what that person would have wanted and what is believed would protect or benet him. Competency: Legal term implying capability of making rational decisions. Unless a court of law determines incompetence, people over 18 years old are assumed to be competent. Decisional capacity and incapacity: Clinical determination of patients ability to make rational decisions. A person with decisional capacity is not cognitively impaired. Forgoing life-sustaining treatment: Also known as withholding treatment. Choosing not to have specic life-extending treatment. Examples of treatments include a ventilator, articial food and uids, antibiotics, and blood. Health-care proxy: Another person appointed to make medical decisions when the patient is no longer competent. Health-care surrogate: Same as health-care proxy. Living will: An advance directive. Patient Self Determination Act of 1990: Required that all hospitals inform patients of the right to complete advance directives. Withdrawing life-sustaining treatment: Removing life-sustaining treatment once it has been initiated. Examples include the ventilator, vasopressors, parenteral uids, and enteral nutrition.

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ADVANCE DIRECTIVES Advance directives address patient wishes when they no longer have the capacity to decide. In 1990, the Patient Self Determination Act stated that all patients admitted to a hospital receiving federal funds must be informed of their right to complete an advance directive. The law in every state provides for advance directives. Written advance directives need to identify patient wishes clearly; many wishes are too general and nonspecic to be useful. For instance, they may request no extraordinary means be used when the person is imminently dying. These requests are too vague and subject to diverse interpretation. In contrast, advance directives should identify specic treatments refused and desired, when the directive should take effect, and who will be appointed as proxy decision-maker. Recommended specics include (Preston, 2000): Clear denition of the circumstances covered, including terminal illness and/or permanent unconsciousness. Statement about whether or not to withhold or withdraw intervention that is articially prolonging dying. Statement about whether or not to initiate resuscitation. Statement about administration of articial food and uids. Statement about administration of blood, antibiotics, or ventilator. Request to use analgesics in sufcient amount to relieve suffering. There are different names for advance directives. They may be called Directives to Physicians, Health-Care Directives, or living wills.

Internet Resource Box Go to the Partnership for Caring Web site to nd advance directive forms for your state: www.partnershipforcaring.org/Advance/adconrm.php.
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Unfortunately, creation of advance directives is difcult because of the problems with frankly discussing and making such difcult decisions in advance. Often, people do not know enough about illness and treatment to make decisions about a future time when they are sick and near death. They are asked to conjure up preferences for an unspeciable future confronted with unidentiable maladies with unpredictable treatments. . . . The healthy may incautiously prefer death to disability. Once stricken, competent patients can test and reject that preference. They often do (Fagerlin & Schneider, 2004, pp. 3334). Only 18% of Americans have advance directives, and education does not seem to increase the number. The choice to avoid the topic of death prevents many older persons from lling out the forms (Winland-Brown, 1998). Most patients prefer to leave nal resuscitation decisions to physician and family, rather than have their own prior uninformed (as to the specic situation) preferences prevail (Fagerlin & Schneider, 2004).

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When advance directives have been written, a major problem is their reaching clinicians. Very few of these forms end up on the hospital or nursing home chart (Fagerlin & Schneider, 2004) and clinicians disregard past decisions if they believe they should act otherwise (Preston, 2000). In the absence of advance directives, and when patients lose decisional capacity, aggressive life-saving measures usually prevail unless surrogate decisionmakers intervene. SURROGATE DECISION-MAKING A health-care proxy or surrogate is a person appointed by the individual while he still retains decisional capacity; the surrogate is expected to make medical decisions in the best interest for the patient when he loses decisional capacity. If the person never expressed his wishes or appointed a proxy, the next of kin is the presumed proxy decision-maker. The following have decision-making authority in descending order: spouse, adult children, parents, and siblings. This order can vary in different states. They are expected to use a substituted judgment standard by expressing the patients previously stated preferences or inferring preferences from previous actions or statements (Jonsen, Siegler, and Winslade, 2002). They are expected to act in the patients best interest. They should consider what the patient would want for himself and put aside their own wants. Quill (2005) proposes the following question to clarify the patients wishes: If the patient could wake up for 15 minutes and understand his or her condition fully, and then had to return to it, what would he or she tell you to do? (p. 1632) Nurses often are in a position to encourage discussion among friends and family members to clarify decisions that are in the patients best interest. You can contribute to an understanding of what the cognitively impaired patient would have wanted by sharing your knowledge of what the patient told you. During the time before a patient loses decisional capacity, it is particularly helpful to document in writing in the medical record any statements about how he would have wanted to live or die. Health-care surrogates or proxies are identied in a form called a healthcare proxy or durable power of attorney for health-care decisions. This is different than a durable power of attorney for nancial decisions. The health-care surrogate may also be called an attorney-in-fact, proxy, or agent. This person should be a close relative or friend and cannot be a physician or employee of the health-care organization providing care. In contrast to living wills, decisions of the durable power of attorney stand up strongly within the medical community and in court. There are several other advantages of the durable power of attorney (Fagerlin & Schneider, 2004): Requires a simple choice of a trusted person to make future decisions. Makes little change in the current practice of family decision-making.

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Improves quality of decision-making because surrogates know in the present time more than patients can know in advance. Inexpensive. Appointing a health-care durable power of attorney ensures both the patient and health-care providers that the principle of autonomy will be respected in all ethical decisions.

Challenges to Social Justice


A commitment to social justice is a commitment to treat all people equally and to work toward ensuring that all people have access to food, water, shelter, and health care. While the privileged world worries about withholding or withdrawing life-sustaining articial feeding and ventilation for dying people, millions of impoverished people throughout the world are brought closer to death for lack of food, clean water, clean air, and health care. They are denied the very means to sustain life. It is important for nurses to maintain this broad perspective whenever we are able to inuence social and health policy in our agencies, communities, or nation. Given limited resources, how can we act to promote life? Nurses need to look at the big picture and promote social justice.

While the privileged world worries about withholding or withdrawing life-sustaining articial feeding and ventilation for dying people, millions of impoverished people throughout the world are brought closer to death for lack of food, clean water, clean air, and health care. They are denied the very means to sustain life.

In the United States, socially marginalized people continue to be disenfranchised from the health-care mainstream and to die young, posing ethical burdens on health professionals. For instance, among African Americans, who are disproportionately poor, 43% of deaths occur before the age of 65 as compared to just 22% for whites (Williams, 2004). Because minority and poor people have the highest rates of death from major types of disease, they are likely to have been exposed to dying family and friends. People living on the ragged edge (Zerwekh, 2000) fear and mistrust health-care providers, and in turn are themselves often feared and mistrusted by nurses and physicians. So it is that when the racially and economically disenfranchised are dying, they experience inadequate communication, broken continuity of care, no advance care planning, poor palliation of symptoms, and supercial response to their social and spiritual suffering (Moller, 2005). At the intersection of poverty and minority status, the stigma of being poor, black, and dying young creates a state of being whose pain is intolerable at best and excruciating at worse. . . . Treating the total pain of the patient demands attending to social suffering in a systematic way (Williams, 2004, pp. 3536).

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Poor African American patients are underserved by the hospice and palliative-care movement. Factors that challenge quality of care at the end of life include lack of stable housing, unavailable family members to assist and give care, and poor access to supportive care services (Kvale, Williams, Bolden, Padgett, and Bailey, 2004). Social justice at the end of life requires the development of comprehensive community programs for all who are dying, especially those facing nancial or social barriers. This requires the willingness to go beyond traditional models of end-of-life care and mobilize broad-based nancial support from community partnerships. This has been illustrated in the accomplishments of the Balm of Gilead Project that provides palliative and hospice care for the impoverished minority population of Birmingham, Alabama. Their name is based on the African American spiritual that includes the lyric: There is a balm in Gilead, to make the wounded whole (Kvale et al., 2004). Practicing with a commitment to social justice requires valuing and standing beside those most disadvantaged in our society, and drawing them into a supportive human community at the end of their lives.

Internet Resource Box Go to www.promotingexcellence.org, Web site of Promoting Excellence in End-of-Life Care and type in Balm of Gilead.
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The Challenge of Avoiding Killing and Relieving Suffering


Contemporary technologies make it possible to extend organic lives. But with this technology, lives are often extended to the point of little quality, no evident benet to the patient, and sometimes great suffering. This presents ethical dilemmas never before encountered in human history. Questions revolve around how to make decisions that result in good (benecent decisions) and avoid harm (nonmalecent decisions). More specically, this section examines the dilemmas posed by: double effect; futility, including indications for withdrawing and withholding treatments; active euthanasia and assisted suicide; and dening death and vegetative states. Double Effect In clinical situations where a proposed intervention can result in both good and harm, the principle of double effect is commonly used to guide ethical reasoning. The principle of double effect asserts that a morally objectionable act is permitted if the intention is to produce a moral good. When the clinician intends a positive outcomeeven if a negative outcome may resultit is morally acceptable to pursue the intervention.

The principle of double effect asserts that a morally objectionable act is permitted if the intention is to produce a moral good.

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Double-effect thinking was developed by St. Thomas Aquinas in the 13th century (Schwarz, 2004). His original formula identies four conditions that must be met before an action with both good and bad results can be justied. These remain useful for consideration today: 1. The act must not be intrinsically wrong. 2. The intention must be to do good. The undesirable bad effect must not be the true goal of action. 3. The bad secondary effect must not be the means to achieve the good effect. 4. The good effect must outweigh the bad. Consider the following examples. A nurse makes an independent decision to administer potassium chloride intravenously to end the life of an 85-year-old unconscious woman who is dying from a progressive neurological disorder. Applying condition No. 1, we can conclude that this action is intrinsically wrong. The killing of innocents is prohibited by all major religious systems and by medical and nursing codes of ethics. Applying condition No. 2, assume that the nurses intention is good; she intends this to be a merciful end to a life she judges will be lled with suffering. The principle of double effect still cannot support her decision because the bad effect is the true goal of the action. Applying condition No. 3, killing is the means to achieve the good effect (relief of assumed suffering), so the action cannot be justied. Applying condition No. 4, the bad effect (death) outweighs the good effect, so No. 4 also does not justify the action. The principle of double effect is commonly invoked to support administering high doses of sedatives and opioids to relieve suffering at the end of life. For example, a nurse may choose to administer high doses of morphine as ordered by the physician to relieve suffering. Certainly this act is not intrinsically wrong. The intention is to do good, to relieve pain. The feared secondary effect is respiratory suppression so severe as to cause death. However, death is not the means to relieve suffering. The morphine subduing the pain is the means to relieve suffering. According to the principle of double effect, the relief of suffering outweighs the risk of causing death. All conditions for the double effect are satised so that the nurse is morally justied. This example is commonly used to explain double effect. But use of that example has one terribly troubling consequence. It perpetuates the myth that there is a serious risk of killing patients by administering opioids at the end of life (Schwarz, 2004). This is simply not the case. The presence of pain is an antidote to respiratory depression caused by opioids and as the pain accelerates, tolerance of respiratory side effects develops. When a patient receiving high doses of opioids dies, it is because of disease progression. See Chapter 15 to understand opioid effects and side effects. The principle of double effect can be applied to guide moral reasoning in many other end-of-life circumstances as well. Consider the experience of a nurse following a physicians order to administer palliative sedation, which involves inducing and maintaining a deep sleep to relieve agitated delirium

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when aggressive symptom-management efforts have failed. Administering a continuous infusion of barbiturates is not intrinsically wrong (condition No. 1). The intention is to do good, to promote restful sleep (condition No. 2). The barbiturate dose is titrated so that it does not directly cause respiratory suppression and death, so condition No. 3 is satised. Finally, condition No. 4 is satised because the good effect (elimination of uncontrolled agitation) is judged to outweigh the bad (total sedation). Some clinicians reject this argument because they point out that death is a predictable consequence of sedation therapy that renders a patient unconscious and immobile. The nurse has a responsibility in such circumstances to question the decision to sedate, embrace the principle of double effect, and/or conscientiously object. Futile Interventions From an ethical perspective, futile interventions should be withheld or withdrawn. An intervention is considered futile if it is incapable of achieving any positive result. For example, cardiopulmonary resuscitation (CPR) should not be initiated in a patient with crushed ribs. Blood would not be administered in a patient with arterial bleeding that cannot be repaired. Renal dialysis is futile for a patient whose heart failure cannot be controlled. The process of judging an intervention to be totally useless is usually controversial unless that patient has devastating disease that makes any desired physiological response impossible. Usually, however, a determination of futility is not 100% certain, so clinicians talk about futility in terms of probabilities or percentages. For instance, procedures might be considered futile if they have 10% or less chance of achieving a useful effect (Jonsen et al., 2002). Contemporary medicine sometimes disregards the futility of a measure. Futile heroic measures are sometimes initiated to signify commitment to life. Extreme life-saving efforts can symbolize an afrmation that the person is worth great effort (Benner, Hooper-Dyriakidis, and Stannard, 1999). For this reason, health professionals often do not even consider withholding what may be a futile measure. When the usefulness of interventions is questionable, it may be helpful to weigh the benets and the burdens imposed by initiating or continuing interventions. The concept of proportionate good justies potentially harmful medical procedures. Proportionate good is determined using a benet-to-burden ratio. Benet/burden analysis should be used to decide on the proportionate good of resuscitation orders, withholding therapies, and withdrawing therapies, for instance. Ethicists also distinguish between the obligation to maintain life through ordinary means but not extraordinary means. Extraordinary means are not ethically justiable. Over time, extraordinary means have come to be dened as treatments that are considered useless and burdensome to the patient and others (Volbrecht, 2003). RESUSCITATION Basic CPR involves mouth-to-mouth breathing and chest compression. Advanced CPR includes chest compression, intubation with ventilatory

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Box 9-4

THE DO NOT RESUSCITATE ORDER

DNR orders should be written when (1) medical judgment indicates that the code would be futile, (2) the informed patient or surrogate consents, and (3) the quality of life that can be expected after resuscitation is poor (Jonsen, Siegler, and Winslade, 2002). DNR orders are written in the patients chart with rationale identied in the progress notes. Recently, DNR orders have become portable in the form of bracelets, necklaces, wallet cards, or standardized forms that are legalized in most states.

assistance, debrillation, cardioversion, vasopressors, and cardiotonic drugs. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) requires that CPR be performed on every patient who has a respiratory or cardiac arrest and does not have a Do Not Resuscitate (DNR) or No Code order. Following a judgment that a code would be futile, DNR orders are written by the physician. See Box 9-4, The Do Not Resuscitate Order. New portable DNR forms allow the orders to be honored outside the hospital, particularly by emergency medical providers. For instance, the state of Oregon uses the POLST (Physician Orders for Life-Sustaining Treatment) document, printed on a shocking pink card, and placed in the front of medical records in hospital and home, as well as encouraged to be prominently posted at home.

Internet Resource Box The POLST is available through the Oregon Health and Sciences University Center for Ethics in Health Care at www.ohsu.edu/ethics.
WWW.

Nurses working at the end of life need to understand that CPR seldom restores cardiac function for people with end-stage disease (Scanlon, 2003). One estimate is that fewer than 5% of terminally ill patients who are resuscitated survive to be discharged from the hospital. Consider the effects of coding a patient who has lost most bodily function and is suffering from emotional, physical, and spiritual distress. If the patient dies despite the code, his last minutes will have consisted of a team of strangers pushing the family aside, pounding on his chest, perhaps cracking his ribs, inserting needles, inserting tubes, and repeatedly shocking him. If the patient lives, he may survive only with articial ventilation or with the effects of cerebral hypoxia that cause a persistent vegetative state. Therefore, nurses must be attentive to the need to speak to patients and/or their families about the futility of resuscitation efforts

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in those with advanced terminal disease, and therefore the need for a DNR order. Families need to understand that approving a DNR order does not mean abandoning their family member with no treatment; only cardiopulmonary resuscitation will be withheld. WITHHOLDING OR FORGOING Throughout the medical world, a critical ethical distinction is made between actively killing the patient and simply allowing the person to die by withholding or forgoing life-prolonging treatments that are believed to be futile. Natural Death Acts, passed in many states, grant patients the right to refuse life-saving therapies. Killing involves an afrmative act committed with the intention to end a persons life. On the other hand, withholding treatment involves never beginning an intervention believed to be futile. A treatment is not morally required if either there is no benet to the patient or if it is burdensome to the patient and perhaps to the family. Benet/burden analysis determines whether a proposed treatment should be withheld. Unfortunately, interpretations of benet and burden are highly controversial. Some religious groups oppose withholding of life-prolonging therapies (see Box 9-5). It is extremely important that nurses, who work alongside the patient and know what they are experiencing, carefully consider benet and burden and help the patient and family to make conscious decisions regarding withholding treatments. It is important to keep in mind that patients are dying from disease, not from withholding of a therapy. Withholding therapy allows the disease process to go forward without interruption.

A treatment is not morally required if either there is no benet to the patient or if it is burdensome to the patient and perhaps to the family. Benet/burden analysis determines whether a proposed treatment should be withheld.

Box 9-5

ORTHODOX OPPOSITION TO WITHHOLDING THERAPIES

Some conservative Christians and Orthodox Jews do not support withholding life-sustaining treatments. Orthodox Jewish medical ethics places high value on preserving human life with few exceptions (Bleich, 1989). Life with suffering is regarded as preferable to death and cessation of suffering. There is no distinction between ordinary and extraordinary means. The physician may withhold otherwise mandatory treatment only when the patient has reached the state of gesisah, i.e., the patient has become moribund and death is imminent (p. 53). Only in the nal hours of life when all treatment is futile, may therapies be withdrawn; at that time resuscitation is not required. In the moments before death, the patient should not be moved or manipulated lest these movements hasten death.

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Consider the benets and burden of withholding four routine interventions at the end of life: antibiotics, food and uids, frequent turning, and daily baths. What is the benet of antibiotics at the end of life? If effective, they may be able to prolong meaningful life. Depending on the site of infection, an effective antibiotic may be able to reduce distressing symptoms, such as respiratory congestion or fever. The burden is that they may be able to extend a life that has been reduced to great suffering or to profound mental incapacity. Some will proclaim that burdensome life must always be chosen over death; others will say that extending a burdensome life is wrong. Nurses serve as moral agents when we are able to help patients and families weigh decisions about choosing or forgoing antibiotics. In the last days of life, decisions also need to be made about forgoing food and uids. The articial administration of food and uids in the end of life is a particularly controversial ethical issue. In order to promote benet/burden analysis, it is particularly helpful that the nurse have a clear understanding of the arguments for and against administering food and uids. A variety of ethical arguments are used to support the position that it is always necessary to provide articial food and uids (Lynn & Childress, 1986). First of all, there is a common presupposition that food and uids are essential to patient comfort and dignity. This argument holds that food and uids are so basic and ordinary that they cannot ever be considered optional; they comprise a basic standard of care. The second line of argument holds that there is always a strong moral obligation to provide food and uids to those who experience hunger and thirst. Without food and uids, it is assumed that suffering will be great. Hydrating and nourishing have great symbolic value; denying these treatments is considered tantamount to starving a person to death, which elicits a deep-seated aversion for some observers. Articial nourishment is assumed to be nurturing and caring. A third argument asserts that withholding food and uids is the same as killing a patient prematurely. But there are also a number of arguments supporting withholding articial food and uids, if they are unlikely to benet the patient and are likely to be burdensome. In fact, administration of food and uids often fails to bring comfort to the dying person (Ersek, 2003; Zerwekh, 2003). Those close to death are reported not to hunger or thirst. Dehydration does not cause suffering in the dying as it does for the living. The complications of enteral tube feedings and uid infusions for those with end-stage organ failure are enumerated in Chapter 16, illustrating that articial food and uids can potentially increase suffering. Likewise, diminishing cognition requires that many patients be tied down so that they do not remove lines and tubes. Thus, the ideal of ensuring comfort and dignity with articial food and uids imposes literal restraints on dignity and comfort in practice. The idea of nurturing with food is legitimate, but when feeding takes place through needles, tubing, bags, and pumps, the nurturing aspects of it fall to the wayside. Clearly, technological feeding is not the same as nurturance. Finally, counter to the

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argument that withholding food and uids may precipitate a premature death, in the event of end-stage organ failure, there is a surprising amount of evidence that articial food and uids do not extend life (Ersek, 2003). See Chapter 16. For patients who are not imminently terminal, clinical judgment may determine that articial food and uids are of clear benet to prolong life and well-being. An ethical choice of articial food and uids at the end of life requires thoughtful burden/benet analysis. Sometimes dying patients choose on their own to stop eating and drinking. In a study of 307 Oregon hospice nurses, one third reported that they had cared for patients who chose to hasten death deliberately by voluntarily refusing uids and food (Ganzini, Goy, Miller, Harvath, Jackson, and Delorit, 2003). The patients reasoned that they felt ready to die, no longer found meaning in living, and were experiencing poor quality of life. Most died comfortably within 2 weeks of beginning their fast. Such autonomous choices should be respected by nurses. Those opposed to such a choice by a patient with decisional capacity should remove themselves from the case after nding another nurse to take over patient care. Sometimes continuing common nursing practices can pose ethical dilemmas. All routine nursing practices should be questioned in terms of benet and burden at the end of life. The ethical issue is whether to cause suffering when little or no benet of an action can be identied. For instance, soap and water baths are traditionally considered benecial to remove sweat and microorganisms, to provide comfort, and to offer nurturing human contact. However, the skin of the elderly is dry and fragile, easily broken. Traditional bathing, long associated with comforting, actually can be harmful. Soap removes oil and can cause irritation and pruritus; friction from scrubbing and drying can cause skin tears. Conventional bathing actually causes serious distress in some demented patients who sometimes become combative during the process. At the end of life, standard bathing practice should be reconsidered (Lentz, 2003). One alternative is a bag bath in which multiple washcloths are soaked in an emollient solution. Ethical action involves choice of comfort instead of imposing burdensome routine that offers no benet. Frequent turning can also be burdensome at the end of life. When death is not near, turning reduces the likelihood of immobility complications, particularly skin breakdown. When pressure sores are already present, frequent turning and positioning are intended to prevent their worsening. However, turning and positioning at the very end of life cause serious incident pain in some patients and offer little chance of healing when circulation, oxygenation, and nutrition are extremely compromised. A palliative approach should seek to avoid hurt and respect patient choice. Ethical action involves choice of comfort instead of burden without benet. WITHDRAWING INTERVENTIONS Ethicists have consistently proclaimed that stopping an intervention is considered morally comparable to withholding it initially. In other words,

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removing a feeding tube is morally the same as never inserting it. Withholding a life-sustaining intervention was once called passive euthanasia, but this terminology is no longer used because of the association with mercy killing. Withdrawing an intervention entails stopping an articial measure so that the disease process comes to a natural end; no lethal act is committed to bring about death. Stopping an intervention is not considered by ethicists to be the same as killing. The criteria for withdrawing interventions are the same as the criteria for withholding them: the interventions are deemed futile and burdensome. The burdens of continuing the treatment outweigh any benets. Although ethicists argue that withholding and withdrawing are equivalent morally, removing an intervention usually causes greater moral distress for a nurse and family at the bedside. To feel that she is acting ethically, the nurse needs to be able to work through the decision and be clear about the futility and burdens of continuing therapy. Likewise, she should help the family with this reasoning. In contrast to withholding or withdrawing life-sustaining treatment, assisted death involves deliberately committing a lethal act intending to bring about death. Ethically (and legally) such an act is more difcult to justify.

In contrast to withholding or withdrawing life-sustaining treatment, assisted death involves deliberately committing a lethal act intending to bring about death. Ethically (and legally) such an act is more difcult to justify.

Assisted Death: Active Euthanasia and Assisted Suicide


Assisted death is also called assistance in dying or aid in dying. Usually this includes both euthanasia and assisted suicide. Euthanasia is translated as good death and is often considered the same as mercy killing in which the patient is killed by another person with merciful intent. Assisted suicide involves the patient killing himself with the assistance of a physician prescribing lethal medication. Voluntary active euthanasia involves interventions administered with the intention to end a patients life. Voluntary means that the patient has asked to have assistance to die. Nonvoluntary euthanasia is when the patient is incapable of making a decision, and involuntary euthanasia is when patients are killed against their expressed wishes. Active euthanasia involves commission of an act with intent to kill. Nonvoluntary and involuntary active euthanasia are universally condemned by contemporary ethicists. The American Nurses Association also opposes nurse involvement in active euthanasia and assisted suicide.

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Likewise, most ethicists and religious leaders oppose the deliberate taking of human life for any reason. However, organizations such as End of Life Choices support the choice and right of cognitively intact patients to hasten their own death.

Internet Resource Box The American Nurses Association end of life position statements can be found at www.nursingworld.org/readroom/position. End of Life Choices Web site is at www.endoifechoices.org
WWW.

When a physician or nurse administers a lethal drug or procedure that the patient has requested, he or she is participating in voluntary active euthanasia, which is illegal everywhere in the United States. When a physician prescribes a lethal drug that the patient administers himself, it is called physician assisted suicide, which is legal only in the state of Oregon. Box 9-6 claries the difference between active euthanasia and assisted suicide. The main difference between the two is that in the former, the health professional actually administers the lethal intervention, whereas in the latter, the patient self-administers it. Voluntary active euthanasia can be defended morally based on the obligation to respect individual autonomy and promote benecence by reducing suffering and eliminating loss of dignity. Advocates of voluntary active euthanasia and assisted suicide believe that legal safeguards can be developed to ensure safe ethical assisted death. The primary objection to voluntary euthanasia is that intentional killing profoundly disregards the sanctity of life and is thereby malecent. Killing the patient is believed to be the same as abandoning him. It violates the very ethical foundations of the health professions. Other objections include concern that patients may choose death

Box 9-6

THE LANGUAGE OF ASSISTED DEATH


ASSISTED SUICIDE Family member, friend, or health professional makes a means of suicide available to a patient, who then administers it himself.

ACTIVE EUTHANASIA Family member, friend, or health professional administers a lethal medication or intervention with a merciful intention to end life.

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because their care is inadequate or because they would rather be dead than become a burden for their families. The slippery slope argument asserts that permitting clinicians to end life intentionally sets a dangerous precedent for society to slip into more widespread inappropriate killing by clinicians who traditionally have been sworn to protect life. For instance, clinicians may judge that the disabled or chemically dependent or mentally ill might be better off dead than continuing to burden society. In addition, those experienced in end-of-life care argue that the end of life can be time for growth and reconciliation, which would be lost by killing the patient. And of course, there is always the possibility of wrong diagnoses and new treatments that could have saved the life of the terminally ill patient seeking assistance in dying. Box 9-7 summarizes these arguments. Nursing at the end of life frequently involves patients inquiring about euthanasia. Some patients may choose to stop eating and drinking, which some clinicians recommend as an alternative to physician-assisted suicide (Ganzini et al., 2003). Thirty percent of oncology nurses in one New England study reported that they had received requests for lethal drugs in the previous

Box 9-7

ASSISTED DEATH ARGUMENTS


OPPOSED TO ASSISTED DEATH Honoring the sanctity of life overrides the right to choose ones own death. Assisting a person to die is abandoning that person. Assisting a person to die destroys trust with the patient and obligation with society to protect life. When society permits assisted death, it creates a slippery slope. The precedent may lead to vulnerable people being killed so that they are not burdensome to family or society.

FOR ASSISTED DEATH Patients have a right to choose.

Assisting a suffering patient to stay in control and end his suffering is benecent. Refusing to assist someone to die destroys trust (delity) with the clinician. Safeguards can be written to ensure safe assisted death that avoids the slippery slope.

Source: Adapted from Ersek (2004).

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year; and 4.5% reported actually performing voluntary active euthanasia (Matzo & Emanual, 1997). Nurses become involved with requests to end life in the following ways: Patients want to talk about their desires and fears. Patients seek information about suicide, assisted suicide, or active euthanasia. Patients ask family members or friends to end their lives or supply the means to do so. Patients ask nurses or physicians to end their lives or supply the means to do so. Against the law, physicians write lethal orders, which nurses are asked to carry out, or which they witness being carried out. Nurses make home visits following unsuccessful or successful suicide attempts. All of these circumstances cause nurses great moral distress. Nurses do have the right to conscientiously object to any involvement, but cannot abandon the patient until another nurse can be assigned. Therefore, you must become as clear as possible about your own beliefs and values. Assisted Suicide in Oregon Oregon is the only state that has legalized physician-assisted suicide (Oregon Department of Human Services, 2005). In 1994, the Oregon voters approved by 51% a Death with Dignity Act, permitting physicians to prescribe lethal medication for terminal patients to self-administer. It was immediately blocked by a restraining order, which a judge ruled unconstitutional. Again in 1997, Oregon voters decided by a 60:40 margin to oppose repeal of the act. In 1998, the rst 24 patients died after self-administering lethal medication prescribed legally by physicians. Box 9-8 identies requirements of the Oregon Death with Dignity Act. The federal government has repeatedly tried to block Oregon law and has threatened prosecution of participating physicians for violating federal drug laws by prescribing controlled substances to kill people. This move troubles even those who are adamantly opposed to physician-assisted suicide because it challenges state rights.

Internet Resource Box Summaries, annual reports, and press releases for Oregons Death with Dignity Act can be found at a Web site of the Oregon Department of Human Services: egov.oregon.gov/DHS/ph/pas/.
WWW.

From 1998 through 2004, only 208 people ended their lives through physician-assisted suicide. Seventeen percent of dying Oregonians talk to

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Box 9-8

OREGON DEATH WITH DIGNITY ACT

Patient and Physician Requirements for Assisted Suicide The patient must be a mentally competent adult who is an Oregon resident. The patient must have a terminal illness with a prognosis of less than 6 months. The patient must voluntarily request a lethal prescription; the request must be oral and written with two witnesses who attest to the patient being of sound mind and voluntarily choosing to end his life. The physician must determine that the patient is terminally ill, competent to decide, and is making the request voluntarily; the physician must refer the patient to a consulting physician to conrm this. The physician must inform the patient of diagnosis and prognosis, result of taking lethal prescription, and palliative-care alternatives. The physician must refer the patient for counseling if he or the consultant conclude that the patient is suffering from a mental disorder. The physician must notify next of kin. The physician must thoroughly document in the medical record and report to the Oregon Health Services.

their families about the possibility, but only 2% formally request it (Tolle, Tilden, Drach, Fromme, Perrin, and Hedberg, 2004). The rate of assisted suicide is about 1 in 1000 deaths, much lower than had been feared. Numbers have not escalated. In fact, the rates of physician-assisted suicide are higher in states where it remains illegal (4 in 1000). Those requesting physicianassisted suicide in Oregon tend to be white, educated, and insured. The three most common end-of-life reasons for patients requesting lethal medication include loss of autonomy, decreasing enjoyment in life, and loss of dignity. Less than 1 in 4 said pain was their reason for requesting death. The three most common terminal conditions represented were amyotrophic lateral sclerosis (ALS), HIV /AIDS, and cancer. The patients must be able to administer their own medication and swallow it. When patients are considering physician-assisted suicide, the nursing role is to listen compassionately and dialogue with patients and families about options, contribute to assessment of the patients decisional capacity, and do everything possible to work with the hospice team to alleviate distress leading to requests for assistance to die. Some patients will request that nurses are present at their dying. The law does not protect a nurse who participates in the assisted suicide by delivering the medication to the home, awakening the patient to administer the drug, placing the medication in the mouth, emptying capsules into food, crushing tablets, or administering

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medication through a gastrostomy tube (Oregon Nurses Association, 1995). The patient must be able to follow through with these activities by himself. The Oregon Nurses Association supports conscientious objection for nurses who want no involvement in this process. They must continue to provide care until a replacement is found. Nurses who choose to be involved should continue to explore options to physician-assisted suicide with the patient, provide emotional and physical comforting for patient and family, and be present without assisting in administration.

Internet Resource Box See the Oregon Nurses Association guidelines on the nurses role in assisted suicide at www.oregonrn.org.
WWW.

Determination of Death and Vegetative States


Throughout human history, death has been dened as the irreversible cessation of heart and lung function, which either caused or was caused by the loss of brain function. Then, the ventilator was developed to permit breathing and oxygenate a beating heart, even when the brain stopped functioning. In the late 1960s, a Harvard University committee and a commission appointed by the federal government proclaimed that a person could be declared dead when all brain functions, including the cerebral cortex and the brain stem, ceased to function (Glannon, 2005). Patients whose entire brain has been destroyed can be declared dead and their organs harvested for transplant. Some patients suffer from higher-brain death (Veatch, 2003). Those in a persistent vegetative state are permanently unconscious with most brain functions gone, including all functions of the cerebral cortex, but they have limited reexes maintained by the brain stem. Persistent vegetative state should be diagnosed by neurologists; a at electroencephalogram (EEG) characterizes partial brain death. The two most common causes of higherbrain death are external trauma to the brain and hypoxia. These patients are no longer able to think or interact. Although these patients can no longer think, they may randomly blink, grimace, smile, or move their limbs. These actions are not intentional, but are reexes that continue because the brainstem is intact. These patients can no longer swallow, but their bodies can survive for prolonged periods through artificial tube feeding. From an ethical perspective, it is important that friends and family understand that a person in a vegetative state is no longer conscious of either benefits or burdens of life-sustaining intervention. Persons in a vegetative state are unaware of themselves and their environment; they cannot experience hunger, thirst, or pain. Frequently, the family has difculty believing the medical evidence and chooses to wait in hopes that cognition may return. Nevertheless, family members will eventually need to make a decision about withdrawing life-sustaining interventions based on the best interests

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of their loved one. How long should the body be sustained despite this lack of consciousness?

Planting the Seeds Family and friends who are sitting vigil at the bedside of a patient in a persistent vegetative state need ongoing explanation to understand the meaning of involuntary movements. They may see every smile or hand grasp as an indication that their loved one is recovering. Explain to everyone at the bedside that only the primitive regions of the brain are functioning. Because of cerebral damage, patients are not able to comprehend or interact. Movements like grimacing, smiling, making sounds, and moving extremities are reexes and are not purposeful. When uninstructed people who are involved with the patient observe this behavior, it can be overinterpreted as meaningful. They may develop groundless hopes for recovery.

Separating Personhood and Body


If human beings are dened in terms of their capacity for consciousness, then a person dies when the cerebral cortex, which makes consciousness possible, permanently stops functioning. However, some faith traditions believe that human beings are still persons even when they permanently lose capacity for consciousness. In April of 2004, John Paul II, then Pope of the Roman Catholic Church, declared that patients in a vegetative state are always human beings with moral standing (Kavanaugh, 2004). He asserted that personhood cannot be reduced to cognitive skills. The traditional Roman Catholic position had been that articial feeding of a person in a persistent vegetative state is a medical treatment that can be halted using ethical benet/ burden analysis. But with his 2004 statement, the Pope proclaimed that in such circumstances, articial food and nutrition are morally obligatory in order to preserve human life at any cost. This position will certainly inuence ethical decisions on behalf of people who are no longer capable of consciousness. It may increase tube feeding in Catholic hospitals, and more nursing home beds may ll with patients in vegetative states being articially nourished. Is this care useful or useless as it preserves bodily life with no chance of restoring cognitive capacities? Is it benecial to preserve bodies that are no longer capable of conscious benet? Because the person is no longer capable of perceiving benet, those who benet from prolonged life would be family or community. All human societies have limited resources and make trade-offs in terms of where resources are expended. Should we feed the unconscious while mothers and children have no food on their table and no access to health care? The social justice issues cannot be ignored. We are severely challenged as a moral community by the power of life and death in our hands.

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CONCEPTS

IN

ACTION

Events in the case of Ms. Terri Schiavo are summarized from Annas (2005), Dresser (2005), Quill (2005), and Tanner (2005). In 1990 Terri Schiavo, age 26, who had been married to Michael Schiavo for 5 years, experienced a cardiac arrest due to hypokalemia and was diagnosed with ischemic encephalopathy. EEGs were at and computed tomography (CT) scans eventually showed severe cerebral atrophy (Quill, 2005). The consensus among neurologists was that she had lost all cognitive function and was in a persistent vegetative state. A feeding tube was inserted and sustained her life as various efforts at rehabilitation failed. Conict between Michael Schiavo and Terris parents, Bob and Mary Schindler, began in 1993. The Schindlers began to seek court decisions to have Michael Schiavo removed as Terris guardian. They questioned his motives, accusing him of abuse and neglect, and asserted that he was not acting in their daughters best interests. In 1998, after 10 years of Terri living in a vegetative state, Michael Schiavo began to try to have his wifes feeding tube removed. He asserted that his wife would not want to live under these circumstances, whereas her parents believed that she would want to live. Terri had no written advance directive. A Florida circuit court approved Michaels request to have the tube removed, but Terris parents appealed. In 2001, the tube was removed for the rst time, but a judge soon ordered it replaced. Michael made another legal effort to withdraw the tube in 20022003. Three neurologists testied in court that Terri was in a vegetative state and could not improve, but a physician for the parents proclaimed that she could be helped with hyperbaric and vasodilation therapies, for which there is no research evidence. Her parents consistently asserted that they still believed Terri was interacting with them and could recover. The tube was removed for the second time in October 2003, but then an emergency appeal was made to the Florida State legislature. Highly edited videotapes of Terri, which captured pictures of Terri looking responsive and interacting, were shown to legislators and to television viewers. Many viewers concluded that Terri was being killed. Governor Jeb Bush signed Terris Law, mandating reinsertion of the feeding tube. In April of 2004, Pope John Paul II reversed the churchs previous position on tube feeding vegetative patients, and declared that feeding tubes are morally mandated for all patients in vegetative states. The Schindlers are devout Roman Catholics. In September of 2004, the Florida Supreme Court declared Terris Law to be unconstitutional. In February 2005, the Florida circuit judge gave Michael permission to remove the tube. On March 18, 2005, the tube was removed for the third time. However, the appeal this time went all the way to Washington, D.C. (continued)

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ACTION

The U.S. Congress viewed the videotape and rushed to pass a bill calling for a federal court to review the case. President Bush signed the bill but the U.S. district court judge reviewed the case and denied the parents request for a restraining order. On March 31, 2005, the U.S. Supreme Court declined to intervene, just as they had on ve previous occasions. Terri Schiavo died that day. The case drew international attention with great passion from right-tolife groups and dramatic response from those who feared that their own selfdetermination at the end of life could be prohibited by government intrusion. 1. Apply the duties of benecence and nonmalecence to this case. 2. What role does veracity play in the Schiavo tragedy? What would be the nurses role in truth-telling? 3. How would events have been different if Terri Schiavo had completed a written advance directive or health-care power of attorney? 4. Apply the concepts of autonomy extended and substituted judgment. Read again the question Quill proposes to clarify best interest in terms of what a reasonable person in the same circumstances would want. 5. Assume a social utilitarian stance to consider the societal impact of unquestioned articial nutrition for patients in the same condition as Terri Schiavo. 6. Apply Care Ethics to imagine a nursing role when conict rst developed between Michael Schiavo and the Schindlers. 7. Examine the concept of futility as applied to Terri Schiavos circumstances. 8. Do a burden/benet analysis for withdrawing articial nutrition in Terri Schiavos circumstances. 9. Right-to-life groups claimed that removing Ms. Schiavos tube feeding was equivalent to killing her. Contrast withdrawal of life-sustaining therapy with mercy killing.

References
Annas, G. (2005). Culture of Life politics at the bedsideThe case of Terri Schiavo. New England Journal of Medicine. Retrieved from www.nejm.org. Benner, P., Hooper-Dyriakidis, P., & Stannard, D. (1999). Clinical wisdom and interventions in critical care. Philadelphia: WB Saunders. Bleich, J. (1989). The obligations to heal in the Judaic tradition. In R. Veatch

(Ed.), Cross cultural perspectives in medical ethics: Readings (pp. 4458). Boston: Jones and Bartlett. Callahan, D. (1998). False hopes: Overcoming the obstacles to a sustainable, affordable medicine. New Brunswick, NJ: Rutgers University. Dalinis, P. (2005). Informed consent and decisional capacity. Journal of Hospice and Palliative Nursing, 7(1), 5257. Dresser, R. (2004). Schiavo: A hard case makes questionable law. Hastings Center Report, 34(3), 89.

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Ersek, M. (2003). Articial nutrition and hydration: Clinical issues. Journal of Hospice and Palliative Care, 5(4), 221230. Ersek, M. (2004). The continuing challenge of assisted death. Journal of Hospice and Palliative Nursing, 6(1), 4659. Fagerlin, A., & Schneider, C. (2004). Enough: The failure of the living will. Hastings Center Report, 34(2), 3042. Ganzini, L., Goy, E., Miller, L., Harvath, T., Jackson, A., & Delorit, M. (2003). Nurses experiences with hospice patients who refuse food and uids to hasten death. New England Journal of Medicine, 349(4), 359365. Glannon, W. (2005). Biomedical ethics. New York: Oxford University Press. Glass, E., & Cluxton, D. (2004). Truthtelling: Ethical issues in clinical practice. Journal of Hospice and Palliative Nursing, 6(4), 232242. Jonsen, A., Siegler, M., & Winslade, W. (2002). Clinical ethics, (5th ed.). New York: McGraw-Hill. Kavanaugh, J. (2004, June 2122). Another opinion: Articial feeding. America, 7. Kvale, E., Williams, B., Bolden, J., Padgett, C., & Bailey, F. (2004). The Balm of Gilead Project: A demonstration project on end-of-life care for safety-net populations. Journal of Palliative Medicine, 7(3), 486493. Ladd, R., Pasquerella, L., & Smith, S. (2000). What to do when the end is near: Ethical issues in home health care nursing. Public Health Nursing, 17(2), 103110. Lentz, J. (2003). Daily baths: Torment or comfort at end of life? Journal of Hospice and Palliative Nursing, 5(1), 3439. Lynn, J., & Childress, J. (1986). Must patients always be given food and water? In J. Lynn (Ed.), By no extraordinary means (pp. 4860). Bloomington, IN: Indiana University Press. Matzo, M., & Emanual, E. (1997). Oncology nurses practice of assisted suicide and patient-requested euthanasia. Oncology Nursing Forum, 24, 17251732.

Moller, D. (2005). None left behind: Urban poverty, social experience, and rethinking palliative care. Journal of Palliative Medicine, 8(1), 1719. Oregon Department of Human Services (2005). Physician assisted suicide: summaries, annual reports, press releases. Retrieved from http:/ /egov.oregon.gov/DHS/ph/ pas/. Oregon Nurses Association (1995). Assisted suicide: ONA provides guidance on nurses dilemma. Retrieved from http:/ /www. oregonrn.org. Preston, T. (2000). Final victory. Roseville, CA: Prima Publishing. Quill, T. (2005). Terri SchiavoA tragedy compounded. New England Journal of Medicine, 352(16), 16301632. Scanlon, C. (2003). Ethical concerns in end-of-life care. American Journal of Nursing, 103(1), 4855. Schwarz, J. (1999). The delegated providers of assisted dying. American Journal of Nursing, 99(6), 9. Schwarz, J. (2004). The rule of double effect and its role in facilitating good end-of-life palliative care. Journal of Hospice and Palliative Nursing, 6(2), 125133. Stanley, K., & Zoloth-Dorman, L. (2001). Ethical considerations. In B Ferrell & N. Coyle (Eds.), Textbook of palliative nursing (p. 663). New York: Oxford University. Tanner, R. (2005, March 22). The Schiavo ght: The battle over the Florida womans care has been raging for years. The Oregonian, A6 Tolle, S., Tilden, V., Drach, L., Fromme, E., Perrin, N., & Hedberg, K. (2004). Characteristics and proportion of dying Oregonians who personally consider physician-assisted suicide. Journal of Clinical Ethics, 15(2), 111118. Veatch, R. (2003). The basics of bioethics (2nd Ed.). Upper Saddle River, NJ: Prentice-Hall. Volbrecht, R. (2002). Nursing ethics: Communities in dialogue. Upper Saddle River, NJ: Prentice-Hall.

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Williams, B. (2004). Dying young, dying poor: A sociological examination of existential suffering among lowsocioeconomic status patients. Journal of Palliative Medicine, 7(1), 2737. Winland-Brown, J. (1998). Death, denial, and defeat: Older patients and advance directives. Advanced Practice Nursing Quarterly, 4(2), 3640. Zerwekh, J. (2000). Caring on the ragged edge: Nursing persons who are disenfranchised. Advances in Nursing Science, 22(4), 4761.

Zerwekh, J. (2003). End-of-life hydrationbenet or burden? Nursing 2003, 33(2), 32hn132hn3. Zerwekh, J., Riddell, S., & Richard, J. (2002). Fearing to comfort: A grounded theory of constraints to opioid use in hospice care. Journal of Hospice and Palliative Nursing, 4(2), 8390. Zerwekh, J. (1994). The truth tellers: How hospice nurses help patients confront death. American Journal of Nursing, 94(2), 3135.

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C H A P T E R

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Spiritual Caring
T HERIS T OUHY
AND J OYCE

Z ERWEKH

Philosophical Reections How strange this fear of death is! We are never frightened at a sunset.
GEORGE MACDONALD

Learning Objectives 1. Differentiate between spirituality and religion. 2. Demonstrate understanding of how spirituality is part of holistic nursing. 3. Appreciate the major world religions and the rituals and traditions important to people from different faith systems at the end of life. 4. Explain the elements of spiritual assessment. 5. Identify spiritual interventions. 6. Reect on ways to develop ones own spirituality.

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Spirituality is a primary concern for dying patients and their families and an essential component of end-of-life care. Spiritual caring is a vital branch of the End-of-Life Caregiving Tree. Nursing tradition, theory, codes of professional conduct, and professional organizations recognize spiritual care as an essential component of nursing care. Health-care organizations such as the Joint Commission on the Accreditation of Healthcare Organizations, the American Association of Colleges of Nursing, and the Association of American Medical Colleges have recognized the importance of addressing spiritual needs in health care. Yet, nurses and other health professionals often struggle with their role in providing spiritual care; and spiritual care at the end of life remains inadequate. This chapter will discuss spirituality as an essential dimension of holistic nursing, with a focus on end-of-life care. It will compare the similarities and differences between religion and spirituality, discuss nursing approaches for assessment and provision of both religious and spiritual care, and offer ways for nurses to develop and deepen their own spirituality and caring.

HOLISTIC NURSING AND SPIRITUALITY


The essence of being spiritual is being whole or holistic, and attention to the spiritual needs of patients is a critical dimension of holistic nursing care. Most nurses express a commitment to holistic care, recognizing that humans have biological, psychological, social, and spiritual needs that all affect health. Although a great deal of emphasis has been placed on the rst three of these needs in nursing education, practice, and research, the area of spiritual care has received far less attention. We can observe the body, we can imagine the mind in operation and measure intelligence, but there is no computed tomography (CT) scan of the spirit (Bell & Troxel, 2001). Understanding spirituality is far more elusive than learning about the pathology associated with illness and disease. Surveys with practicing nurses suggest that most have had little, if any, education in spiritual care. Spiritual care entails assisting patients to nd a sense of meaning and reconciliation with others and with a transcendent reality, encouraging patients to strengthen their spiritual life, as they choose. An emphasis on spirituality in nursing is not new; nursing has encompassed the spiritual from its origin. In years past, nursing students were educated in care of the body, mind, and spirit, often in schools of nursing with religious afliation. The science of nursing was not seen as separate from the art and spirit of the discipline. Florence Nightingales view of nursing was derived from her spiritual philosophy, and she considered nursing a spiritual experience. She believed that Nursing should be a search for truth, a discovery of Gods laws of healing and their proper application (Macrae, 1995, p. 9). Nightingale considered spirituality intrinsic to human nature, our deepest and most potent resource for healing (Macrae, 1995, p. 8). She saw spirituality as an awareness of our inner connection with a higher reality that

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creates, sustains, and organizes the universe. Many nursing theories address spirituality, including those of Neuman, Parse, and Watson (Martsolf & Mickley, 1998). The secularization of the Western world, with its focus on that which is touchable, present, and material, has displaced concepts such as spirituality in favor of modern scientic thinking. Nursing theory, research, and practice, in attempts to establish the discipline as scientic and research-based, have followed these trends. Spirituality is abstract, cannot be measured, and is often associated with religion, an area considered off limits for scientic medicine. The de-emphasis on spiritual concerns and the contemporary lack of attention to spirituality in nursing education and practice have relegated spirituality to the clergy, leaving patients perceiving that nurses focus on the body and emotions but not the spirit. These trends appear to be changing, however, and both nursing and medicine are beginning to reclaim some of the essential healing values from their roots. Spirituality is an intrinsic part of holism and overlooking a persons spiritual needs hinders a comprehensive understanding of the whole person.

The essence of being spiritual is being whole or holistic, and attention to spiritual needs of patients is a critical dimension of holistic nursing care.

SPIRITUALITY CONTRASTED WITH RELIGION


Distinguishing between religion and spirituality is a concern for many health professionals. Religion can be described as a social institution that unites people in a faith in God, a higher power, and in common rituals and worshipful acts. A god, divinity, and/or soul is always included in the concept (Strang &, Strang, 2002, p. 858). Each religion involves a particular set of beliefs. Spirituality is a broader concept than religion and encompasses a persons search for meaning, relationships with a higher power, with nature, and with other people. Ultimately, spirituality involves a sense of unity with a reality more enduring than the individual self. Religion may be considered one path by which some people create a sense of the spiritual and support the personal sense of self. Everyone has a spirit or is spiritual whether or not they consider themselves religious or belong to an organized religion or faith community. The word spirit is derived from the Latin spirare meaning to breathe life. The spirit can be thought of as that which gives us the breath of our life, the meaning and purpose for our living. Religious systems and needs are not universal and are different for each individual. Spiritual needs, on the other hand, are essentially the same for everyone. The way people meet these needs will be different and may change over the course of a persons life, but the core spiritual needs are universal. The concept of spirituality is found is all cultures and societies (Bell & Troxel, 2001). See Box 10-1, The Five Rs of Spirituality.

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Box 10-1

THE FIVE RS OF SPIRITUALITY

Reason and ReectionSearch for meaning and purpose in ones life. Finding the will and reason to live. Reection and meditation on ones existence (may be enhanced through art, music, or literature). ReligionMeans of expressing spirituality through a framework of values and beliefs, often actively pursued in rituals, religious practices, and reading of sacred texts. Religion might be institutionalized or informal. RelationshipsLonging to relate to oneself, others, and a deity/higher being (may be expressed via service, love, relationships, trust, hope, and/or creativity). Appreciation of the natural environment. RestorationAbility of the spiritual dimension to inuence health and well-being positively.
Source: Adapted from Covier (2000).

The denition of spirituality proposed by the 1971 White House Conference on Aging endorsed this view: The term spiritual pertains to ones inner resources, especially ones ultimate concerns; the basic values around which all other values are focused; the central philosophy of lifereligious, non-religious or anti-religiouswhich guides conduct, and the non-material and/or supernatural dimensions of human nature (Moberg, 1984). A hospice nurse describes her relationship with a patient who lived a deep spiritual life outside of organized religion: He had terrible things to say about television evangelists and the organized church. At various times I asked him questions like, What has life meant to you? and What has brought harmony to your life? He described his connection with nature. He was so attuned to nature, like what Ive read about Native American spirituality. His belief was that when he died he was going to be the blossoms in the spring, or the clouds in the sky. That was under a crusty gruff exterior. With few exceptions, research on spirituality, and even instruments used to measure and assess spirituality, have had a Christian focus. There is a need to broaden the research to focus on the various ways spirituality may be expressed, both within and outside the context of different religious beliefs. Outside organized religion, many contemporary people have developed individualistic spiritual convictions. For instance, they may practice meditation while adhering to no specic religion. They may nd experiences of the

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transcendent in music or nature without adhering to a specic creed. This is especially important in contemporary America where a multicultural population with diverse faith systems and views of the spiritual is increasing. Nurses of today reect this growing diversity and must be knowledgeable about how concepts of faith and spirituality inuence not only their lives and practice, but also the lives and health of their patients. The increasing diversity of the nursing profession will add insight and richness to our understanding of the concepts of spirituality, religion, and faith, and their importance to the health of our patients. Nurses often view spirituality and spiritual care in religious terms and as the responsibility of chaplains or other religious leaders. They worry about the ethics of health professionals entering into discussions that may be construed as religious in nature, or the implied risk of imposing their own beliefs on patients. Conicts may occur when nurses are faced with caring for a patient whose beliefs differ from their own. One hospice nurse told the author that she chose hospice nursing because she felt she could bring her deep Christian-based faith to help patients accept her God at the end of their life. After a short time in practice, she realized that her role with care of the dying was not one of imposing her own beliefs, but rather supporting the patient in nding his or her own meaning and purpose in life. Her own beliefs gave her the strength to perform her work, guided her care, and strengthened her own spirit. However, she learned to respect and support her patients beliefs and values rather than impose her own. Many nurses struggle with these same issues and this has been identied as one of the reasons they may be hesitant or uncomfortable with spiritual care.

Spirituality is a broader concept than religion and encompasses a persons search for meaning, relationships with a higher power, with nature, and with other people . . . Ultimately, spirituality involves a sense of unity with a reality more enduring than the individual self.

ORGANIZED RELIGIOUS TRADITIONS


For many people, spirituality is rooted in organized religious traditions. For the faithful, religious practices such as prayer and worship services help develop their sense of meaning and purpose in life and nurture their spiritual needs.

Judeo-Christian Religions
The most ancient of the major contemporary world religions began approximately 3500 years ago with Judaism in North Africa and Hinduism in India (Kemp & Bhungalia, 2002; Levey & Greenhall, 1983). Out of Judaism emerged Christianity about 2000 years ago and Islam about 1400 years ago. These have become the religions of North Africa, Europe, the Americas, Australia, and New Zealand. All religions emerging out of Judaism believe in worship of

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and prayer to one God. Prayer includes giving thanks, asking for forgiveness, and asking for help. The forms of worship and prayer and rules for behavior vary dramatically between subgroups and sects. Prayer, readings from sacred texts, and centuries-old rituals are comforting at the end of life. Psalm 23 has comforted people of Judeo-Christian heritage for generations. It follows in an American Bible Society (1976) contemporary translation: The Lord is my Shepherd. I have everything I need. He lets me rest in elds of green grass and leads me to quiet pools of fresh water. He gives me new strength. He guides me in the right paths, as he has promised. Even if I go through the deepest darkness, I will not be afraid, Lord, for you are with me. Your shepherds rod and staff protect me. You prepare a banquet for me, where all my enemies can see me; You welcome me as an honored guest and ll my cup to the brim. I know that your goodness and love will be with me all my life; and your house will be my home as long as I live.

Eastern Religions
Out of Hinduism emerged Buddhism about 2600 years ago (Kemp & Bhungalia, 2002; Levey & Greenhall, 1983). These Eastern traditions are widespread throughout Asia in various divisions and sects. Both Hinduism and Buddhism believe in the cycle of death and rebirth. Freedom from that endless cycle of reincarnation and suffering is brought about by meditation and right actions. Buddhism teaches that suffering ends when a person is able to let go of attachment to life and its desires. Followers of Eastern traditions do not usually conceive of spiritual reality in terms of a single god; some pray to multiple gods. At the end of life, they seek comfort through ancient rituals, chanting, and meditation. Box 10-2 presents an overview of major religious belief systems with traditions and practices that may be associated with end-of-life care. Each religious group has many divisions with unique beliefs and practices. Likewise, each individual may interpret the tenets of faith in his or her unique way. Keep in mind that many patients derive their spirituality outside the context of organized religion. The nurse and the patient may not be religious, but can still be spiritual. Everyone has spiritual needs and everyone meets them in their own unique way.

Copyright 2006 by F. A. Davis.

Box 10-2

RELIGIOUS BELIEFS, TRADITIONS, AND PRACTICES AT THE END OF LIFE

Note that within tradition, there is a wide divergence in beliefs and practices. Below are generalizations about the most commonly held beliefs and practices CHRISTIANITY
Beliefs Practices Including Those at the End of Life Roman Catholic Christians

Jesus Christ was born about 2000 years ago. He taught compassion and forgiveness, was tortured and hung on a cross (Crucixion) for his teachings, and rose from the dead (The Resurrection). Jesus was the Messiah or Savior. All who believe in him can have their sins forgiven and go to Heaven after they die. Each group of Christians believes they have the truth. There are three major divisions: Roman Catholic, Protestant, and Orthodox. For all, the groups, the sacred text is the Bible, including the Old Testament (Hebrew Bible) and the New Testament, which describes the life and teachings of Jesus.

Participation in sacred rites called sacraments is important throughout life. Baptism involving sprinkling of water as a symbol of washing away sin. In infancy or at the time conversion, baptism admits the person to the church. A dying person must be baptized to enter the afterlife. Anointing the Sick by a priest for those near death. Formerly called Last Rites. Sacrament of Reconciliation (Confession) in which a priest grants forgiveness from God. Eucharist (Holy Communion) in which the participant receives bread consecrated by the priest and believed to be the Body of Christ. Deacons and eucharistic ministers, who are not clergy, may administer Communion. The foundation of the Catholic worship service or Mass is the celebration of Communion. Prayer and sacraments are comforting at the bedside of the dying. (continued)

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Box 10-2

RELIGIOUS BELIEFS, TRADITIONS, AND PRACTICES AT THE END OF LIFE (CONTINUED)


Protestant Christians

Sacred rites or sacraments are less important in many branches of the Protestant Church. Most believe that baptism is essential to life after death. Frequent reception of Communion is comforting to members of some denominations, particularly Lutheran and Episcopalian. Prayer, Bible readings, and hymns are comforting at the end of life. Pentecostal and charismatic churches believe in faith healing. Christian Scientists rely on spiritual healing rather than medicine.
Orthodox (Greek and Russian) Christians

Confession and Communion are important sacred rites as death approaches. Last anointing may occur before or after death. JUDAISM
Beliefs Practices Including Those at the End of Life

Jewish faith dates from approximately 1500 to 1000 B.C. The central belief is in one God. Practicing Judaism involves following the Law, practicing rituals, and supporting the people chosen by God. Sacred texts are the Hebrew Bible (Includes the Torah)

Orthodox strictly observe Jewish law. Conservatives follow that Law but believe it can be altered within the context of contemporary culture. Reform do not believe that the Torah was written by God and interpret Jewish law liberally. The Sabbath or Shabbat begins just before sunset on Friday and ends just after sunset on Saturday. On Shabbat, certain rituals and prohibitions are followed.

Copyright 2006 by F. A. Davis.

and the Talmud (legal code for living). There are three main divisions: Orthodox, Conservative, and Reform.

The dying person can be comforted with readings from the Torah and Psalms, which is acceptable to be read by those who are not Jewish. Prolongation of life is usually emphasized. The dying person is not left alone. After death, the body is straightened and covered. Among the Orthodox and observant Conservative Jews, cremation, embalming, and ornate cofns are forbidden. Burial occurs within 24 hours of death. In the rst week after death, the mourners sit "shivah," which includes many restrictions. Kaddish, an ancient Jewish prayer which exalts God, is recited by groups of 10 men throughout the mourning period lasting 30 days.

ISLAM
Beliefs Practices Including Those at the End of Life

Islam is dened as submission, and a Muslim is one who submits to Allah, the Arabic word for God. Muslims, Jews, and Christians worship the same God. Mohammad founded Islam. During a vision, the Koran (Qur'an) was revealed to him. Another sacred text is the Tradition or Hadith. Islam recognizes the prophets of the Hebrew

There are Five Pillars of Islamic Practice: 1. 2. 3. 4. 5. Daily confession of faith Prayer ve times daily preceded by ritual cleaning Fasting during Ramadan, except for those who are ill Giving to the needy Pilgrimage to Mecca, if possible

At the end of life, discussions about death are often not wanted. Cousins or uncles may be the contact people who will decide whether to tell the patient and family about diagnosis and prognosis. (continued)

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Box 10-2

RELIGIOUS BELIEFS, TRADITIONS, AND PRACTICES AT THE END OF LIFE (CONTINUED)


Patients may choose to face toward Mecca, which is West or Southwest in the U.S. Prolongation of life is usually emphasized. Only same sex caregivers should touch the person's body. After death, non-Muslims should not touch the body. They can wear gloves if necessary. It is usually not comforting or acceptable for non-Muslims to read aloud from the Qur'an.

Bible, as well as Jesus. Mohammad is considered to be God's nal Prophet.

HINDUISM
Beliefs Practices Including Those at the End of Life

Hinduism began in India about 1000 to 1500 B.C.E., about the time of Moses. The goal of Hinduism is freedom from suffering and repeated reincarnation, caused by actions in this life and past lives. Karma is the law that determines consequences of past actions. Enlightenment occurs through meditation. Some believe in one God (Brahman the Creator) and others believe in multiple Gods. Major scriptures are the Vedas, the Upanishads, and the Bhagavad-Gita.

Believing in the cycle of death and rebirth, a devout Hindu is likely to be accepting of death. Choice of consciousness as death nears may limit acceptance of symptom management. Chanting, prayer, incense, and rituals accompany dying. Family members should be the only ones touching the body. Preference is for cremation. White is the color of mourning.

Copyright 2006 by F. A. Davis.

BUDDHISM
Beliefs Practices Including Those at the End of Life

Buddhism began as a reform of Hinduism. Siddhartha, born in the 6th century B.C., became enlightened while sitting under a banyan tree, and was then known as the Buddha. He taught that freedom from being reincarnated repeatedly can be attained through absence of desire. There are two major branches: Theravada and Mahayana. Buddhism teaches Four Noble Truths: 1. All sentient beings suffer. 2. The cause of suffering is attachment to life and other people. 3. Suffering ends when we stop desiring. 4. Suffering will cease if you follow the Eightfold Path of right beliefs and right actions.
Source: From ELNEC (2003); and Kemp (2003).

Consciousness in dying is highly valued. Death is accepted. Expect chanting, prayer, incense, and rituals at the deathbed. White is the color of mourning. Cremation is common. A new incarnation occurs right after death. There are no specic regulations about handling the body.

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Box 10-3

FOUR CENTRAL SPIRITUAL DOMAINS AT THE END OF LIFE

Hope: Expectation of achieving a future good Meaning: Sense that ones life has purpose or signicance Reconciliation: Reunion with other people or with God; bringing life into harmony after estrangement. Transcendence: Going beyond the bounds of human experience

CORE SPIRITUAL NEEDS AT THE END OF LIFE


Death confronts dying people with issues related to hope, meaning, reconciliation, and transcendence. Therefore, nursing goals at the end of life should foster hopefulness, meaningfulness, reconciliation, and transcendence. We do not undertake this alone, but in collaboration with the entire health-care team, particularly the spiritual counselor or chaplain if accepted by the patient. See Box 10-3, Four Central Spiritual Domains at the End of Life.

Meaning
For many, living in the face of death compels examination of their purpose on earth and whether they will live after death. They search for meaning. Meaning refers to a sense of ones individual life having had a purpose or signicance. Puchalski (2002, p. 290), a physician expert in spiritual care, says: Dying should be as natural an experience as birth. It should be a meaningful experience for dying persons, a time when they nd meaning in their suffering and have various dimensions of their experience addressed by their caregiver. These dimensions are: the physical (pain and symptom control); the psychological (anxiety and depression); the social (feelings of isolation from friends and family); the spiritual. It is our responsibility to listen to people as they struggle with their dying. We need to be willing to listen to their anxieties, their fears, their unresolved conicts, their hopes, and their despairs. If people are stuck in despair, they will suffer deeply. It is through their spirituality that people become liberated from despair. As people are faced with serious illness or the prospect of dying, questions of meaning often arise. Why did this happen to me? What will happen to me after I die? Why would God allow me to suffer this way?

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Will I be remembered? Will I be missed? Spiritual meaning is central to the dying person and should receive greater emphasis by health professionals. In one survey, patients ranked coming to peace with God and praying nearly identical in importance to pain control (Steinhauser, Christakis, Clipp, McNeilly, McIntyre, and Tulsky, 2000). Patients are comforted by believing that death is a normal part of life and that they will be remembered and live on, either through their relationships, their accomplishments, or their good work. Dying patients want to believe that they have done their best in life, have a purpose for living, and will be in the presence of a loving God or Higher Power after death (Puchalski, 2002).

Dying patients want to believe that they have done their best in life, have a purpose for living, and will be in the presence of a loving God or Higher Power after death.

Stephenson, Draucker, and Martsolf (2003) asked hospice patients to describe the experience of spirituality in their lives and how their experience with spirituality had changed since they became ill. They were also asked to describe a spiritual experience in their life, reect on their spiritual needs, and discuss how nurses can help them meet those needs. Few participants used the terms spiritual or spirituality, and none reported newly found religion or life-altering spiritual experiences in the face of impending death. Rather, they shared life stories that illustrated how they found meaning in their lives, their values, and their relationship with others, God, and the environment. One author remembers reecting with Mother Essie Law, leader of her Pentecostal church, while she was on her deathbed. For 2 hours she talked about all the people she had come to love. Spirituality involves a search for purpose and connectedness with others and God or a Higher Power. According to the Stephenson study, dying patients do not expect theological epiphanies, but rather they want us to be supportive listeners who help them explore meaning. To do this, a nurse asks questions and encourages life review: Tell me more about your life. What has been most meaningful in your life? How have you found strength throughout your life? A hospice nurse explained the possibility of nding a deepened sense of meaning with a dying patient: We talked about terminal illness as a real paradox. There are some positive things that can happen that never would have happened otherwise: a new point of view, a new spirituality, renewed family relationships, or just appreciation. At the same time you are losing that great joy and experiencing great pain.

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Hope
Palliative interventions should be offered in the context of hope rather than as a response to a hopeless situation. Hope can be described as condent expectation of achieving a future good that is personally signicant. At the end of life, there are two kinds of hope: hope to live more fully and deeply in the time remaining and hope to live beyond death (Kemp, 2001). Unless caregivers understand the nature of hope and the many ways it can be expressed, our care can impede rather than promote hope. Factors identied by patients as impediments to hope include hopelessness in others, depleted energy, uncontrollable pain and suffering, negative hospital experiences, dehumanizing messages, feeling that no one cares, lack of information, and physical and emotional distancing of caregivers (Herth, 1993; Miller, 1989). For example, providing emotional and physical comfort to minimize suffering and maximize the patients energy to invest in hope is an important nursing response at the end of life. Carrying out an intervention such as relieving a symptom, or creating a peaceful and beautiful environment, suggests that you are hopeful and that you care.

Palliative interventions should be offered in the context of hope rather than as a response to a hopeless situation.

Hope is a powerful force against despair and helps patients and families journey through the difcult times leading up to death. At the end of life, hope is not just associated with cure but extends beyond a physical nature to that of a social, psychological, and spiritual nature. Because we have declared limits on treatment or cure does not mean that we have pronounced the limits of human potential. Patients are invited to open themselves to new targets of hope, to draw on strengths not yet experienced (Jevne, 1993, p. 126). Central to the instillation of hope is the caring relationship between nurses and patients. Nurses can inspire hope by helping patients and families focus on living the moment as fully as possible. A patients hope for a cure may change to his or her hope for freedom from pain, day to day experiences to enjoy precious moments of life, time to accomplish life goals before life is over, sharing love with family and friends, relief of suffering, death with dignity, and eternal life (Matzo, 2001). Nursing responses that instill hope can foster harmony, healing, and wholeness (Watson, 1988). Caring relationships characterized by unconditional positive regard, encouragement, and competence help patients feel loved and cared about, thus inspiring hope. Nurses may need to help family focus on goal directed interventions that emphasize what the patients still wants to accomplish. Nursing interventions that foster hope (Ersek, 2001) are as follows: Control symptoms Encourage patient and family to become involved in positive experiences that transcend their current situation Foster spiritual processes and nding meaning

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Box 10-4

HOPE-PROMOTING EXPERIENCES

Feel the warmth of a sunbeam Share experiences children are having Note the crystal blue of the sky Savor the richness of black coffee at breakfast Feel the tartness of grapefruit to wake up the taste buds Watch the activities of an animal in a tree outside the window Benet from each encounter with another person Write messages to grandchildren, nieces, or nephews Study a favorite painting Listen to a symphony Build highlights into each day such as meals, visits, Bible reading Keep a journal Write letters Make a tape recording of your life story Have hope objects or symbols nearby Share hope stories Focus on abilities, strengths, and past accomplishments Encourage decision-making about daily activities; foster a sense of control Extend caring and love to others Appreciate expressions of caring concern Renew loving relationships
Source: Adapted from Miller (1983); and Jevne (1993).

Promote connection and reconciliation Help in the development of realistic goals Focus attention on the short-term future Box 10-4 offers suggestions for experiences that foster hope for patients at the end of life. Consider how nurses foster hope for Ms. Harriet Truman, age 87, who lived at home until last year, when her husband died suddenly from a heart attack. For the last 7 months, Harriet has lived in a skilled nursing facility with excellent nurses and an active group of volunteers. Her emphysema has worsened, with repeated respiratory infections necessitating hospitalization. Now Harriet has signed a living will, requesting not to be re-hospitalized or resuscitated. The nurses and aides are fostering hope by controlling her growing breathlessness and chronic osteoarthritis pain, encouraging visits from daughters and grandson, and taking her into the garden every day. She wants to complete a legacy of her childhood stories on audiotape; a volunteer comes

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twice a week to help her with recording. Nieces have brought her tapes of her classical and folk music favorites. She looks forward to a reunion with her eldest son, who has been living out of the country for the last 14 years. Every week, a Eucharistic minister from her Roman Catholic church brings Communion and prayer to her bedside. For patients whose religious life is a source of hope, providing opportunities for prayer, reading hope-lled Scripture, and creating an environment in which the patient feels comfortable expressing hope in God or a Higher Power are hope-promoting interventions. Hope is promoted by having a clear sense of meaning.

Connectedness and Reconciliation


The sense of connectedness through relationship is a spiritual need that contrasts with the sense that many people have of being alone and isolated from others and from God. Terminal illness brings that loneliness and need for connectedness into sharp focus. Related to the need for connectedness, there is opportunity for reconciliation at the end of life. Reconciliation involves healing past estrangements from other people and from God. In America, many people have lived lives cut off from close friends and family. They have been committed to self-help and individualism. Even for those who live in tight-knit family and social circles, there may be those who have been lost to past quarrels and disagreements. At the end of life, some choose reconciliation. Nurses encourage reconnecting with cut-off relatives and friends. Sometimes we can even serve as go-betweens to bring people together. Likewise, for many individuals, dying is an opportunity for reconnection with God and their faith. Patients should be offered religious counsel and ritual that brings them opportunity for reunion with the transcendent. One facet of reconciliation is the need for forgiveness or acceptance. Sin, regret, and guilt are common to the human experience, and dying brings opportunity to forgive and be forgiven. This is the last chance to nd reunion and peace. Sadly, some are never able to let go of their anger and resentment; they cannot nd their way beyond broken relationships and estrangement. Nurses helped brothers Craig and Joe to reconcile, for example. When their mother died, they had fought bitterly over the provisions of her will and never spoken again. Over the years, they completely lost touch. Nine years later, when Craig was dying of multiple myeloma, the palliative unit nurse asked if there was anyone he should be talking to or seeing. At rst he thought he would write a letter to Joe, but then he asked his wife to see if she could nd him. When Joe walked into the room, they both started weeping. Craig died 2 days later.

Transcendence
Transcendence is dened by philosophers and theologians as going beyond the limits of lived human experience. Transcendence involves detachment and

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separation from life as it has been lived to experience a reality beyond oneself and beyond what can be seen and felt. Dying people often experience such transcendence in one form or another. Nurses cannot make transcendence happen, but should have open minds and listen carefully when we hear stories of transcendence or witness the unexplainable. Two hospice nurses, Callahan and Kelley (1992), describe their repeated experiences with the nearing death awareness of patients on the verge of death. They assert that the experience of dying frequently includes glimpses of another world and those waiting in it. Although they provide few details, dying people speak with awe and wonder of the peace and beauty they see in this other place. They tell of talking with, or sensing the presence of, people whom we cannot seeperhaps people they have known and loved (pp. 2223). Their messages often include preparing for a change or travel. They may talk about traveling, packing, or nding a map. Some will describe the place where they are going. One patient described his upcoming journey: He was frustrated at the boat he saw across the river. It was carrying both his wife and his sister, who were dead. . . . The boat wouldnt come across the river. Finally, at 4:30 in the morning, he told me the boat was coming across the river, closer and closer. He died at 4:47 AM (Zerwekh, 1993, p. 29). Nurses at the deathbed sometimes share their own mystical experiences that are outside explanations of everyday reality. One nurse described seeing a luminescent angel at a dying patients bedside when she was still a nursing student. For fear of being considered crazy, she told no one for many years. Other nurses describe once-in-a-lifetime experiences of witnessing a spirit leave the body at the moment of death. One nurse recalls: He began to have periods of apnea. I turned to look out of the window. . . . I remember hearing some birds singing. Then I looked back at the patient and watched his spirit come up out of his head (Zerwekh, 1993, p. 29). Another nurse asserts: When the patient is edging out of this world, I want to be there. Its a spiritual experience beyond words. Nurses can help families understand and accept transcendent experiences that they are witnessing. One nurse tried to comfort a dying patients family by describing her patients transcendent experience: Three days before she died she talked about a comforting person who would take her across. She would tell me that she believed the person was coming to lead her. It was so meaningful to her, so comforting. She wasnt frightened at all. She thought it might be an angel, but she wasnt sure. She would talk with the angel

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while I was there. It was kind of eerie to be with her. I explained that her experience wasnt unusual for people near death, and tried to convey to the family the comfort she was receiving from the experience. The nurses response to the spiritual need for transcendence is to recognize and be open to it, and to be willing to explain experiences of the transcendent to patient and family if they choose.

RECOGNIZING SPIRITUAL DISTRESS


Spiritual distress at the end of life is an impaired ability to experience meaning, hope, connectedness, and transcendence. Spiritual distress at the end of life commonly involves an intensication of alienation and disconnection, while dying forces a progressive series of separations and detachment from life itself. Manifestations of spiritual distress include anger, guilt, blame, hatred, expressed absence of meaning, expressions of alienation and turning away from friends and family, inability to enjoy, and inability to participate in religious activities that have previously provided comfort (Doenges, Moorhouse, and Geissler-Murr, 2004). A hospice nurse expert gives an example: I felt there was a lot of spiritual stuff going on with him. A lot of unrest in his soul. He was in constant motion. I got Trilicate for his bone pain and called in the chaplain. It turned out he was very angry at God because he had given his life to the church and now he was dying so soon. Another nurse gives an example of suspected spiritual distress: She was suffering at some level and I didnt know where. I wanted to spend some time with her to try to nd out. Somewhere, I really felt that she had some past secret, something that she felt was totally unforgivable. Building on a fundamental understanding of the core spiritual needs and spiritual distress occurring when these needs are not met, the next section examines how a nurse can complete individualized spiritual assessments to identify spiritual distress and respond to meet spiritual needs.

SPIRITUAL ASSESSMENT AT THE END OF LIFE


Patients welcome a discussion of spiritual matters and want health professionals to consider their spiritual needs (OBrien, 1999; Post, Puchalski, and Larson, 2000). For instance, three fourths of patients in a rehabilitation center considered their religious and spiritual beliefs to be important, but three fourths said that no one from the health-care staff ever spoke to them about their spiritual and religious concerns (Anderson, Anderson, and Felsenthal,

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1993). A spiritual history opens the door to a conversation about the role of spirituality and religion in a persons life. People often need permission to talk about these issues. Without some signal from the nurse, patients may feel that such topics are not welcome or appropriate. The role of the nurse is to listen and encourage people as they search for their own answers. Obtaining a spiritual history involves simply listening to patients as they express their fears, hopes, and beliefs. A spiritual assessment is intended to elicit information about the core spiritual needs and how the nurse and other members of the health-care team can respond to them. Just as a medical history is completed using a systematic review of physiological systems, hospices and palliative-care programs incorporate spiritual assessment instruments into their medical records; these are used to steer conversations about spirituality. They are not intended to be used as checklists or routine paperwork, but rather as guides to begin a spiritual history and to focus listening as patients talk about their beliefs and what gives their lives meaning (Puchalski & Romer, 2000). Listening and responding to spiritual needs and concerns are best conducted within the context of a relationship. An assessment form may offer some ideas regarding spiritual-care needs but does not replace relationship as the context for the delivery of spiritual nursing care. Checklists are merely starting points to begin in-depth dialogues about faith and meaning.

Internet Reference Box Examine the spiritual assessment tool available through Last Acts: http://www2.edc.org/lastacts/assess.asp.
WWW.

Open-ended questions within the context of the nurse-patient/family relationship can be used to begin dialogue about spiritual concerns. Samples of the types of questions that you might try out in your practice follow (Blues & Zerwekh, 1984): Concept of God or Spiritual Reality Is spiritual peace important to you? What would help you achieve it? Is your religion or God signicant for you? Can you describe how? Is prayer or meditation helpful? Sources of Hope or Strength What matters most to you in your life? What is your source of strength and hope? To whom do you turn when you need help? What brings you joy and comfort? What are you afraid of right now? What are your worries?

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Religious Practices What spiritual or religious practices bring your comfort? Are there religious books or materials that you want nearby?

Planting the Seeds Nurses who are so busy with medical and nursing tasks should examine their priorities. What really matters for your patients who will soon not be among the living? They are facing the loss of self, all they love, and the only reality they have known. Take time to discover their stories and their struggles. Ask them, What really matters to you now? At the same time, respect patients privacy on matters of spirituality and religion. Avoid imposing your own beliefs. Throughout life and around the world, human beings cry out: To be known To feel connected To feel appreciated To feel useful To love and be loved To be compassionate To give and share To have hope To experience meaning and purpose

At the end of life, these spiritual needs intensify in the nal search for hope, meaning, reconciliation, and transcendence. The person must let go of life and go beyond the limits of lived human experience. Through a continual process of spiritual assessment, we seek to be attuned to their struggle.

SPIRITUAL CARING INTERVENTIONS


Cassidy (1998) proposes that the most powerful caring intervention is to be a companion to the dying: The spirituality of those who care for the dying must be the spirituality of the companion, of the friend who walks alongside, helping, sharing, and sometimes just sitting empty-handed, when we would rather run away. It is the spirituality of presence, of being alongside, watchful, available, being there. . . . We who would be a companion to the dying therefore must enter into their darkness, go with them at least part of the way, along their lonely and frightening road . . . enter into the suffering and share in some small way their pain, confusion and desolation (Cassidy, 1998).

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There are some specic approaches that foster the practice of this spirituality of the companion. Keep in mind the overall goals of fostering meaning, hope, connection, and recognizing transcendence. Interventions identied as particularly important to accomplish these goals include (Emblen & Halstead, 1993; Goldberg, 1998; Nagai-Jacobson & Burkhardt, 1989; Stiles, 1990; Touhy, 2001a; Touhy 2001b; Zerwekh, 1993): Relief of physical discomfort, which permits refocus on the spiritual Comforting touch, which fosters nurse-patient connecting Authentic presence and being there Attentive listening Knowing the patient as a person Listening to life stories Sharing caring words Fostering reconciliation Fostering connections with that which is held sacred by the person Respecting religious traditions and rituals Referring the person to a spiritual counselor

Internet Reference Box Discover Mannings three Hs of empathic presence and active listening by visiting the Hospice Foundation Web site: http://www.hospicefoundation.org/caregiving/conclusion.htm.
WWW.

Fostering Reconciliation
As nurses, we often have opportunity to suggest that people review their past and make needed reconnections with those they have lost and faith traditions they have neglected. The goal is to come to some resolution of the past. We can encourage them to tell the story of their lives, and to examine past pains that need healing. A hospice nurse proclaims simply, The work of the people is to review their life. Where there are estrangements, we encourage giving and receiving forgiveness. A nurse might say, You havent seen your son in 11 years. Why not call him? Is now the time? We do not push or preach. We offer to help heal the brokenness. Patients make their own choices.

Authentic Presence
Authentic presence, for example, becomes possible when nurses deliberately choose to keep their minds uncluttered by distracting thoughts and preoccupations so that they are able to pay full attention in caring relationships with their patients. The practice of presence is described in Chapter 6.

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It takes courage and a deep sense of ones own spirituality to be able to have a healing presence with the person nursed. Presence at the end of life involves talking soul to soul. A hospice nurse describes this as The essence of me is sharing with the essence of them beyond the words were talking about (Zerwekh, 1993, p. 27).

Authentic presence becomes possible when nurses deliberately choose to keep their minds uncluttered by distracting thoughts and preoccupations so that they are able to develop caring relationships with their patients.

There are a number of spiritual-caring interventions in the following story told by a nurse in a nursing home: She wasnt real sure that she had lived a good life, nor was she real sure she was going to have a place in heaven. She was very afraid of pain of dying, of being alone, and being that way eternally. She shared some of her lifes experiences. I tried to point out to her that if she had not been in this world that there would have been many lives that would have been affected differently. I tried to help her see some of the positive impact she had on other people in her life. We cried together, hugged, and she thanked me very much and just asked if I would be there when the time came. I told the staff that if she looks like she is getting close to death, call me. And they did, and I was able to be with her and hold her hand as she passed on. This nurse listened to the patients life story and came to know her as a person. She was present and listening with her whole being to the fears and doubts expressed as she and the patient talked soul to soul. In an attempt to share how important this persons life was, she was fostering connections and sharing love and caring words. The nurse and patient touched, hugged and cried, and when the time of death came, the nurse was able to comfort and be there, holding her hand. The nurse cannot prevent death from occurring but can accompany the patient some of the way just by staying, watching, and being there. By helping patients express their beliefs and by staying with them during the events of their illness, nurses are providing spiritual care. A patient dying in a hospital once described to a nurse the two kinds of people who came into the room (Levine, 2003, p. 47): One kind could hardly sit still in their chairs, could hardly touch her, or be present and there was very little eye contact. The other kind could merely sit with her without having something to say, having even to reassure her. Their presence, their acceptance of her situation was reassurance enough. Their ngers might just toy gently with her forearm, they didnt have to grasp her, they could touch her with love.

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A lovely example of this type of comforting and quiet presence was shared by Wright (2001, p. 22) in a reference to A.A. Milnes Winnie the Pooh: Piglet sidled up to Pooh from behind. Pooh, he whispered. Yes Piglet? Nothing, said Piglet, taking Poohs paw. I just wanted to be sure of you.

Referral to a Spiritual Counselor


Spiritual care should not be provided by the nurse or any other member of the caregiving team in isolation. Instead, it is always enhanced by a strong spiritual counselor or chaplain. Spiritual counselors are essential members of hospice teams and are often included in palliative-care teams. The best spiritual counselors are prepared by clinical pastoral education (CPE) programs to understand psychosocial and spiritual needs at the end of life. They must be able to provide spiritual support to people from a variety of faith traditions and from no identied tradition. The best spiritual counselors are able to listen and offer unconditional love, without focusing on evangelism. They offer religious teaching for those individuals from traditions similar to their own. An effective spiritual counselor will sit with dying persons to help them discover their own spiritual end-of-life journey. A hospice nurse describes one case needing referral: He began to talk about the Trinity and what it meant and was it real. I felt like it was important for me to have the answers and to make sure that I wasnt telling him something that would send him in the wrong direction after he died. So I had his minister come to the house. He helped me reect on my thinking that I had the power to control whether a person goes to heaven or hell by what I say. So there was some mutual learning and we laughed.

An effective spiritual counselor will sit with dying persons to help them discover their own spiritual end-of-life journey.

The nurse should offer to call church, synagogue, temple, or mosque for all patients who identify with a specic faith community. Clergy and designated laypersons should be available to offer the traditional end-of-life ministries of their religion. However, they may be ill-prepared to confront the profound questions of hope and meaning that overwhelm some dying individuals. In such cases, patients may choose to explore these issues with hospital or hospice spiritual counselors as well as receiving comfort from the sacred traditions of their religion.

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NURTURING THE SPIRIT OF THE NURSE


Because spiritual care occurs over time and within the context of relationship, probably the most effective tool at the nurses disposal is the use of self (Soeken & Carson, 1987, p. 607). Thinking about what gives your own life meaning and value helps in developing your spirituality and assists you in being able to support patients. Giving your patient the best spiritual care stems from taking care of your own spiritual needs rst (Bell & Troxel, 2001). Following are ways to take care of your own spiritual needs: Finding quiet time for meditation and reection Keeping your own faith traditions Being with nature Appreciating the arts Spending time with those you love Journaling

Find at least three ways to nourish your own spirit. Nurses often do not take the time to do so and become dispirited. This is especially true for nurses who work with dying patients and experience grief and loss repeatedly. Having someone to talk to about your feelings is important. Chapter 3 explores strategies for self-care. Practicing compassion for oneself is essential to authentic practice of compassion for others. Box 10-5 lists some personal spirituality questions for reection.

Giving your patient the best spiritual care stems from taking care of your own spiritual needs rst.

CONCEPTS Box 10-5

IN

ACTION

PERSONAL SPIRITUALITY QUESTIONS FOR REFLECTION FOR NURSES

What do I believe in? What gives my life meaning? What do I hope for? Who do I love and who loves me? How am I with others? What would I change about my relationships? Am I willing to heal the relationships that trouble me?
Source: Adapted from Newshan (1988).

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CONCEPTS

IN

ACTION

As you read the following passage think about these questions: Are you a glassy-eyed or clear-eyed nurse? Have you met nurses who are glassy-eyed? Clear-eyed? How is their nursing care different? What can you do to become more a more clear-eyed nurse? Stephen Wright (2001, p. 3) describes the observations of a desperately ill hospitalized friend who said that there are only two types of nursesthe glassy-eyed and the clear-eyed. Glassy-eyed ones came into the room, did all the nursing as good as any other, but you could tell by the look in their eyes, no matter what they were saying to you or you to them, that they werent really with you. They were already thinking of what they want to tell you or have already moved on in their minds to something else. Cleareyed nurses are absolutely present for you. You can tell by the look in their eyesclear, attentive, nothing else was going on with them. They werent thinking about the next job or patient or what they did the night before. They were just right there for you. Clear-eyed nurses were just as busy as the others but the grace of their presence made the difference. The work of the expert nurse is not just built on professional knowledge and skills, it is also dependent on understanding the immense healing power of our uncluttered selvesand that is a spiritual path requiring spiritual practices . . . Illness and dying are attacks upon the soul and the suffering that emerges from such an assault upon the core of our being can be relieved in the respite we nd in a clear-eyed nurse. No matter how brief the contact, our presence can be a form of sanctuary as well.

References
American Bible Society. (1976). Good News Bible. Nashville, TN: Thomas Nelson Publishers. Anderson, J., Anderson, L., & Felsenthal, G. (1993). Pastoral needs for support within an inpatient rehabilitation unit. Archives of Physical Medicine Rehabilitation, 74, 574578. Bell, V., & Troxel, D. (2001). Spirituality and the person with dementia: A view from the eld. Alzheimers Care Quarterly, 2(2), 3145.

Blues, A., & Zerwekh, J. (1984). Hospice and palliative nursing care. Orlando, FL: Grune and Stratton. Callahan, M., & Kelley, P. (1992). Final gifts. New York: Simon and Schuster. Cassidy, S. (1988). Sharing the darkness. London: Darron, Longman and Todd. Covier, I. (2000). Spiritual care in nursing: A systematic approach. Nursing Standard, 14(1), 3236. Doenges, M., Moorhouse, M., & Geissler-Murr, A. (2004). Nurses pocket guide: Diagnoses, interventions, and rationales. Philadelphia: F. A. Davis.

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Emblen, J., & Halstead, L. (1993). Spiritual needs and interventions: Comparing the views of patients, nurses and chaplains. Clinical Nurse Specialist, 7(4), 176182. ELNEC (End of Life Nursing Education Curriculum). (2003). AACN and COH. Ersek, M. (2001). The meaning of hope in the dying. In B. Ferrell and N. Coyle (Eds.), Textbook of palliative nursing (pp. 339351). New York: Oxford University Press. Goldberg, B. (1998). Connection: An exploration of spirituality in nursing care. Journal of Advanced Nursing, 27(4), 836842. Herth, K. A. (1993). Hope in older adults in community and institutional settings. Issues in Mental Health Nursing, 14, 139156. Jevne, R. (1993). Enhancing hope in the chronically ill. Humane Medicine, 9(2), 121130. Kemp, C., & Bhungalia, S. (2002). Culture and the end of life: A review of major world religions. Journal of Hospice and Palliative Nursing, 4(4), 235242. Kemp, C. (2001). Spiritual care interventions. In B. Ferrell & N. Coyle (Eds.), Textbook of palliative nursing. New York: Oxford University Press. Levine, S. (2003). Mercy in the room. American Journal of Nursing, 103(9), 4748. Levey, J., & Greenhall, A.(1983). The concise Columbia encyclopedia. New York: Columbia University Press. Macrae, J. (1995). Nightingales spiritual philosophy and its signicance for modern nursing. Image: Journal of Nursing Scholarship, 27(1), 810. Martsolf, D., & Mickley, J. (1998). The concept of spirituality in nursing theories: Differing world views and extent of focus. Journal of Advanced Nursing, 27, 294303. Matzo, M. (2001). End-of-life care: Nurses should help patients to live fully, inspire hope. American Nurse, September-October, 14. Miller, J. F. (1989). Hope-inspiring strategies of the critically ill. Applied Nursing Research, 2, 2329.

Miller, J. (1983). Coping with chronic illness: Overcoming powerlessness. Philadelphia: F.A. Davis. Moberg, D. (1984). Subjective measures of spiritual well being: Review of religious research. New York: Religious Research Association. Nagai-Jacobson, M., & Burkhardt, M. (1989). Spirituality: Cornerstone of holistic nursing practice. Holistic Nursing Practice, 3, 1826. Newshan, G. (1998). Transcending the physical: Spiritual aspects of pain in patients with HIV and/or cancer. Journal of Advanced Nursing, 28(6), 12361241. OBrien, M. E. (1999). Sacred covenants: Exploring spirituality in nursing. AWHONN Lifelines, 3(2), 6972. Puchalski, C. (2002). Spirituality and end-of-life care: A time for listening and caring. Journal of Palliative Medicine, 5(2), 289294. Puchalski, C. Retrieved February 2, 2004 from http://www2.edc.org/ lastacts/assess.asp. Puchalski, C. & Romer, A. (2000). Taking a spiritual history allows clinicians to understand patients more fully. Journal of Palliative Medicine, 3(4), 129137. Post, S., Puchalski, C., & Larson, D. (2000). Physicians and patient spirituality: Professional boundaries, competency, and ethics. Annals of Internal Medicine, 132(7), 578583. Soeken, K., & Carson, V. (1987). Responding to the spiritual needs of the chronically ill. Nursing Clinics of North America, 22, 604611. Steinhauser, K., Christakis, N., Clipp, E., McNeilly, M., McIntyre, L., & Tulsky, J. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of the American Medical Association, 284(19), 24762482. Stephenson, P., Draucker, C., & Martsolf, D. (2003). The experience of spirituality in the lives of hospice patients. Journal of Hospice and Palliative Medicine, 5(1), 5158. Stiles, M. (1990). The shining stranger. Cancer Nursing, 13(4), 235245.

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Strang, S., & Strang, P. (2002). Questions posed to hospital chaplains by palliative care patients. Journal of Palliative Medicine, 5(6), 857864. Touhy, T. (2001a). Nurturing hope and spirituality in the nursing home. Holistic Nursing Practice, 15(4), 4556. Touhy, T. (2001b). Touching the spirit of elders in nursing homes: Ordinary

yet extraordinary care. International Journal for Human Caring, 6(1), 1217. Wright, S. (2001). Presence of mind. Nursing Standard, 15(4), 2223. Zerwekh, J. (1993). Transcending life: The practice wisdom of nursing hospice experts. The American Journal of Hospice and Palliative Care, 20(3), 4045.

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U N I T

F I V E

STRENGTHENING THE FAMILY

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C H A P T E R

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Understanding and Strengthening Families


Philosophical Reections He cannot bring up her fear. She is afraid of being alone. He cannot see that she is not angry at him. They chase one another in ordinary circles. They love each other.
LH IN LARSEN, 2002

Learning Objectives 1. Explain the impact of illness on the entire family. 2. Draw a genogram and ecomap to depict family structure and relationships outside the family. 3. Explain common family relationship patterns that will impact family coping with a dying member. 4. Identify the transition processes involved as a family adapts to the dying of a family member. 5. Describe the burdens of providing physical and emotional care to a dying family member. 6. Explain how nurses can guide families through the transition and redenition that occurs when someone in the family is dying. 7. Identify strategies to teach stressed family caregivers how to care for their dying family member. 8. Describe how nurses can promote communication between family members. 9. Explain the nurses limitations in being able to strengthen the family.

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Understanding and strengthening families is a major branch of the Endof-Life Caregiving Model. This branch of the tree joins the trunk, which visually represents caring and connecting, with the leaves, which represent comforting. This chapter describes how to understand and work with contemporary American families when someone they love is dying. After dening family and family systems, the chapter covers the structure and function of families and networks, the familys experience of transition when someone is dying, the burden of caregiving for family members, and the ways nurses can strengthen families so that they can care for and comfort the dying person.

FAMILIES AND FAMILY SYSTEMS


The term family has come to mean many things in contemporary society. We are all familiar with the traditional understanding of a family as a group of individuals who are related through genetic ties, marriage, and adoption. We visualize mother and father, daughters and sons, perhaps grandparents, all living in the same household. However, families today include unmarried couples with or without children, single parent households, same gender families, and previously married parents who come together to create a blended family. For purposes of this chapter, we will look at family in its broadest sense, as a group of individuals who depend on one another for emotional, physical, and possibly economic support (Hanson & Boyd, 1996). Beyond this immediate network is a broader social support system that is essential to understand and strengthen.

Planting the Seeds Nurses should consider family to be whoever the patient tells us is family. This includes a wide variety of people whom we might also label as friends or loved ones. To understand the impact of serious illness on a family, it is helpful to understand the whole family as a system. Illness in one member affects the lives and relationships of everyone else. A metaphor is helpful to understand how family members are intertwined. First of all, imagine the family as a large owerpot with a variety of owers blooming individually but all rooted in the same soil. Now pull out one of the owers and notice how it is tangled in the roots of the others. All will suffer some damage as one owers roots are torn up; they will struggle to ourish again. The family as a whole dies along with one of its membersthe family will never be the same again (Davies, 2000, p. 148).

FAMILY STRUCTURE AND FUNCTION


Who exactly comprises the family and how is the family functioning? To understand the human body, you must learn both anatomy and physiology. Likewise, to understand the family, you must learn how it is structured and how it functions.

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Structure
It sometimes can take many visits or meetings with a patient to straighten out who are the household members, relatives, and inuential friends. The family members will, in large part, determine the quality of living and dying for their dying family member. At the same time, these family members will suffer the loss of someone vital to their lives. Many frameworks are useful to depict family structure. Genograms or family trees can be used to diagram relationships between relatives. Drawing a genogram is much easier than writing several narrative pages to explain family relationships. Detailed instructions for drawing a genogram are contained in most community health nursing and family nursing texts. In the most common way of drawing a genogram, males are symbolically represented as boxes and females as circles. When a couple is married, a box is connected to a circle with a horizontal line. When they are living together but unmarried, the line is dotted. Children are then identied as boxes or circles hung in birth order from the horizontal marriage line. The marriage line is slashed once for separation and twice for divorce. The household is represented with a dotted line encircling it. See Figure 11-1, Basic Genogram Rules.

Figure 11-1 Basic Genogram Rules.

1914-2001 Male Female X= deceased Double lines = patient

Married Male on left Female on right

Separated

Divorced

Children in birth order with oldest on left

Living together

Dotted line = current household

Strong bond

Conflicted relationship

Cut off or estranged

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It is also important to understand the broader support network for individuals and families. In many cases, American preoccupation with mobility and self-reliance has left many people with minimal community support. Ecomaps are diagrams that are drawn to depict family connections to the community. A circle is drawn around a genogram of the nuclear family, and then lines are drawn like spokes extending outward to people and organizations with which the individual and family relate. Isolation, conict, and relationships outside the family can be readily seen in a detailed ecomap. Figure 11-2, Genogram and Ecomap Illustrated, diagrams one familys genogram and ecomap.

Function
Knowing the usual ways that a family functions helps you to understand its present state and to assess whether it will be able to organize itself at the end

Figure 11-2 Genogram and Ecomap Illustrated.

Church where Anne teaches Sunday school Matthew's soccer team Grandpa Grandma Neighbor Matthew Matthew's work demands as policeman Anne Anne's part time job as R.N.

Suzie age 8 leukemia

Mark age 3

Adam 6 months old developmentally delayed

Friend of Anne

Health providers Suzie's school Strong mutually supportive relationship Weak relationship

Friend of Anne newly divorced with 4 children

Stressful relationship Flow of energy

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of life. Your nursing goal is not to provide family therapy, but to strengthen the family and enable its members to provide care. To do this, you need to discover the ways the family has functioned over time. Is there unspoken pain under the surface? Is this a family that does not talk about trouble? Are there long-kept secrets? Is there a history of drug abuse or alcoholism? Is there a history of mental illness? Have members of the family been physically or emotionally abusive to one another for years? Have there been suicides? Are they cut off from one another due to past hurts? Nurses study family dynamics. You can become familiar with family patterns by watching body language and behavior as well as words. Some individuals may change the subject and walk out of the room when difcult subjects arise. Some may become agitated or blaming. Some may be persistently quiet and apologetic. To understand dynamics, it is useful to recognize some common family interaction patterns. Communication Styles Virginia Satir (1988) described four habitual unhealthy styles of communication when families come under stress: placating, blaming, distracting, and being super-reasonable. Individuals in families adopt habitual ways of coping that avoid directly addressing and solving distressing problems. Placating is the most common unhealthy communication habit. The placater avoids stressful realities by trying to smooth over conict. When circumstances are stressful, the placater seeks to please others and continually apologizes and puts himself down. The placater assumes the blame when things go wrong. For the placater, self-esteem comes from winning external approval. Blaming or fault-nding is the second most common unhealthy family communication pattern. When stressed, the blamer points at another person and puts him down. Blamers and placaters often come in matching pairs. A blamer can continue his pattern only if there is another family member who continues to accept the blame. The blamer avoids stressful realities by faulting someone for them. The irrelevant or distracting style involves clowning or acting out rather than facing difculties. In a family with constant stress, such as one experiencing an abusive alcoholic parent, the distracting style develops as a way of avoiding the frightening realities of the situation. For example, a child who has developed a distracting style might try to make everyone laugh in order to interrupt family conict. Finally, the super-reasonable style involves avoiding feelings, intellectualizing, and staying aloof rather than facing emotional realities. The superreasonable family member tries to avoid confronting emotion by focusing on facts. For example, a super-reasonable husband might focus all of his discussion with the home visiting hospice nurse on the mechanics of the infusion pump or the pharmacology of morphine. Meanwhile, his wife is close to death and he avoids talking about that.

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One nurse described walking into a home where all four habitual styles were being used at once, so that no one was actually addressing the problem at handpoorly managed pain. The wife was standing over her husband, yelling at him for overdosing on narcotics to relieve his severe pancreatic cancer pain. She kept proclaiming, Youre gonna be an addict just like your brother. The husband was curled up on the sofa, apologizing repeatedly for complaining. One daughter was sitting next to the television, coiling and uncoiling her fathers oxygen tubing and giggling on the cell phone. Another daughter began to ask the nurse about the pathophysiology of the cancer. They had fallen into unhealthy patterns of communication to avoid the harsh reality they were facing. The intervention for this family involved getting them to name their worries about dads suffering and how it was affecting everyone. Once family members named the truth, the family could problemsolve together. Family Interaction In addition to recognizing unhealthy communication styles between family members, it is helpful to identify how the entire family interacts. A healthy American family has strong ties that unite members, but also encourages the development of individual identities. Healthy families are also characterized by having relationships with the community outside themselves. Salvador Minuchin and H.C. Fishman (1981) characterized two kinds of unhealthy families: enmeshed or disengaged. Enmeshed families are very dependent on each other and have a low sense of individual autonomy. Enmeshment is perceived as unhealthy from the viewpoint of mainstream American values because individuals, particularly women, are not given a chance to develop independently. From the perspective of providing health care, enmeshment can become a problem when the family cannot accept desperately needed external help. Women caregivers may be particularly burdened because they feel simultaneously obligated to care for their loved one and to reject outside assistance. Enmeshed families are often described as having rigid boundaries with the outside world. They rarely interact with people or organizations outside the family. In enmeshed families, individual dying members may not be permitted to make end-of-life decisions. Depending on cultural tradition, decisions are often made by designated family members, such as the eldest son or the oldest matriarch in an extended family. Death of family members in those positions of authority can be devastating to the enmeshed family until it reorganizes itself. Disengaged families are at the other end of the spectrum in terms of involvement with each other. Individual members have a low sense of belonging; everyone goes his own way. This may appeal to the American ideal of individualism and liberty, but the family functions poorly when someone in the family needs help. Members are not able to rally around one another to provide support and they cannot rely on each other as caretakers. They are difcult to organize for practical assistance in terminal illness.

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To assess family functioning and relationship patterns, determine the following as you interact with a family over time. These are not questions to be asked directly. Rather, an observant nurse working with members of the interdisciplinary team begins to recognize patterns in the ways family members are interacting in the nurses presence and in the way they describe family reaction to past events. Do family members trust each other? Can family members rely on each other for help? Do family members trust outsiders? Will they accept help? Is this family tied to a wider network/community? Does the family communicate feelings directly? Is expression of feelings avoided in this family? Are anger, blame, and fear the dominant feelings expressed? Does the family have a history of problem-solving or do members live from crisis to crisis? Does this family have a history of being open to change and new ideas? Is there a history of physical, sexual, or emotional violence in this family? See Box 11-1, Unhealthy Family Coping Patterns. Planting the Seeds A practical way to get a snapshot view of how a family interacts is to ask several family members, How did your family work things out last time there was a family crisis? Tell me about it.

Box 11-1

UNHEALTHY FAMILY COPING PATTERNS

Unhealthy across all cultures: Low trust of each other Anger, fear, and blame frequently expressed Living from crisis to crisis History of past and present violence within the family

Unhealthy in American mainstream culture but may reect healthy patterns in traditional families: Low trust of outsiders Indirect communication with unspoken rules Avoidance of emotional expression or persistent dramatic emotional expression Resistance to change and new ideas Rigid roles for family members

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Keep in mind when assessing family interactions that culture also plays a role in family dynamics. For instance, ethnic families living outside the American mainstream culture may have cultural values and patterns that have worked for them for generations and should be respected. They may have indirect communication styles, avoid overt expression of feeling, resist change, and maintain rigid roles within the family. If they are recent immigrants to America, they may have strong boundaries that dictate against help from outsiders.

THE FAMILY TRANSITION PROCESS


Davies (2000 & 2001) describes how families adapt to a family member dying. As they realize that death has become inevitable, research reveals that most families disengage from their formerly held understanding of life, redene the situation, and adopt a new understanding of life. Davies has described seven dimensions of the transition process; these dimensions begin when the family recognizes that the family member is not going to recover: redening, burdening, struggling with paradox, contending with change, searching for meaning, living day-to-day, and preparing for death. See Box 11-2, The Process of Family Transition. If we understand these processes, we can better understand each familys experience. Note that the seven dimensions can be identied in most families, but not every family necessarily goes through each of these in stepwise fashion. Redening is the central process that inuences all of the other dimensions. Families seek to maintain normal life as long as possible. However, illness will at some point force them to redene and shift their roles and responsibilities to accommodate to the new situation. The patients acknowledgment of serious illness makes that possible. If patient and/or family try to maintain business as usual, while the patients incapacities make normal routine impossible, anger and frustration at the failure to function will surface. If the dying family members inability to maintain his role in the

Box 11-2
1. 2. 3. 4. 5. 6. 7.

THE PROCESS OF FAMILY TRANSITION

Redening Burdening Struggling with paradox Contending with change Searching for meaning Living day-to-day Preparing for death

Source: From Davies (2001).

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family is acknowledged and understood, other family members can begin to take on new responsibilities to fulll the role the dying family member has left. As patients redene their roles, burdening becomes an issue for the family. As their conditions deteriorate, patients see themselves as burdens and family members try to bear the burden. If patients and family clearly redene their roles, it becomes possible to discuss openly how to relieve and manage burdens. Burdens of caregiving are discussed further in the next section. End-of-life care is lled with paradox, both for the families and for the dying family members. Struggling with paradox involves the reality that the patient is both living and dying. Family members hang on to hope for extended life, and yet face the reality that death is approaching. Each person struggles with that paradox differently. Some hold onto hope for life until the moment of death; some readily acknowledge the approach of death; and many live with both possibilities in mind until death occurs. Another dimension of the paradox is that caregivers want at the same time to care for their loved one and to return to normal life. Dying family members desire care from their family but do not want to pose a burden. This dimension of family transition is a difcult one to experience because the only resolution to the struggle is the one result that all family members are struggling against death of the family member. Contending with change describes coping with the dramatic changes in family life: relationships, roles, social relationships, and employment. All of these shift dramatically as the illness progresses. Caregivers are forced to break new responsibilities into manageable tasks and to maintain as much normalcy as possible. Even non-caregiving family members feel the push to change when roles are redened. Searching for meaning involves the search by many families for philosophical and spiritual answers. Coming face-to-face with death, they reect on life and its meaning. For instance, the husband of a dying wife may come to realize that his most important purpose is family life, not making more money. The patients sister may decide to return to her traditional Jewish roots to understand living and suffering better. Some families develop an attitude of living day-to-day, which involves making the most of each day. When each moment may be the last conscious moment in a life, some families deliberately choose to appreciate it. They nd satisfaction in making the most of everyday moments, like a shared meal or the fragrance of owers. Finally, the transition involves preparing for death itself by completing nancial and legal tasks, and nal arrangements. If awareness is open and redenition has proceeded, family members are involved in responding to the persons nal wishes. They will be involved in legal practicalities so that their family member prepares a living will, a regular will, and medical power of attorney documents. Preparing for death involves decisions regarding the future of the household, particularly children and spouses. Many families discuss funeral or memorial arrangements with their family member. When

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awareness is open, dying family members deliberately may choose to create family memories, such as journals, photo albums, audiotapes, or videotapes.

THE BURDEN OF CAREGIVING


Often, family members take care of their dying loved one in the last weeks, months, and even years of life. See Box 11-3, The Process and Consequences of Taking Care, which outlines caregiving responsibilities, interactions, and consequences. Although gratifying for many, such care provision also frequently takes a toll physically and mentally on those individuals providing care. Caregiver burden can be described as the oppressive or worrisome load borne by people providing direct care for the chronically ill (Hunt, 2003, p. 28). See Box 11-4, Assessment of Family Caregiver Coping, to identify questions for you to consider as you evaluate family coping with the illness itself. The stresses of family caregiving have been demonstrated to result in high levels of depression and impaired physical health while providing care (Haley, LaMonde, Han, Narramore, and Schonwetter, 2001). Caregiving burden with inadequate family support is also associated with poor physical and mental health during bereavement (Brazil, Bedard, and Willison, 2002). Nevertheless, a majority of chronically ill patients have family members and other lay providers as their primary caregivers. Much of the work of caregiving occurs during a process that Stetz and Brown (1997) have called taking care, which can be understood as strategies, interactions, and consequences of caregiving.

Box 11-3
RESPONSIBILITIES

THE PROCESS AND CONSEQUENCES OF TAKING CARE

1. Managing the illness and responding to suffering 2. Managing the environment 3. Facing and preparing for dying INTERACTIONS 1. Responding to issues in family relationships 2. Struggling with the health-care system CONSEQUENCES 1. Personal suffering 2. Coming to know ones own strengths
Source: From Stetz & Brown (1997).

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Box 11-4

ASSESSMENT OF FAMILY CAREGIVER COPING

Who are the caregivers? Are the caregivers overwhelmed? How could the caregivers be relieved? Is there a way to simplify caregiving? Who in the family is suffering and needs help? Are there physical needs not being addressed? Are there emotional needs not being addressed? Are there family conicts that prevent provision of care? What is this familys capability? Can this family make long-range plans? Would social work intervention strengthen this family?

Planting the Seeds Whenever you are caring for a patient who lives at home with life-threatening illness, never forget to consider the burdens of family caregivers. Keep the questions from Box 11-4 clearly in mind as you assess caregiver well-being. As nurses, we are responsible for promoting the health of those who will survive after our patient has died.

Caregiving Responsibilities
Caregiving responsibilities include managing the illness and responding to suffering, facing and preparing for dying, and managing the environment (Stetz & Brown, 1997). Managing the illness and responding to suffering involves physical care, such as assistance with eating, mobility, and therapies. It involves all of the practical assistance needed for daily living, recreation, and visits to health-care providers. It involves symptom management, including measures to provide physical and emotional comfort. Likewise, managing the illness requires monitoring and reporting symptoms. The physical demands of managing the illness accelerate as the patients condition deteriorates. For instance, the physical demands involved in ensuring proper medication administration are minimal compared with those involved in helping a wheelchair-bound patient get in and out of bed. Managing the environment involves seeking and obtaining information about the illness and helping resources. This endeavor may require extensive time on the telephone and the Internet. For example, caregivers may nd themselves on the phone trying to nd answers about insurance reimbursement or coverage. Information must be sorted and prioritized. Visitors and phone calls often need to be limited as the persons condition worsens.

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Personal and family resources must be organized to provide care. Arranging physical space for the dying person in the home is challenging. Where will the bed be placed? Will the rest of the familys personal space be invaded because the patient needs to be downstairs and close to a bathroom? Facing and preparing for dying is a third taking care strategy. Every caregiver becomes aware of death drawing near in his or her own way. The realization may be gradual or sudden. If death can be acknowledged, then the caregiver assists with arrangements for wills, nancial and legal planning, and funerals or memorials. Caregivers may even facilitate personal visits and good-byes by friends and family.

Caregiving Interactions
Taking care involves the challenge of interactions with family members and health-care providers (Stetz & Brown, 1997). Caregivers must respond to family relationship issues as described earlier. Frequently, family dynamics require them to face conict. Family members have different opinions about what is best for their loved one. For instance, one person insists on pushing the dying person to eat. Another family member is distressed about drugging the person at the end of life. Potential conicts about goals of care are endless at this time of intense emotions. Likewise, caregivers often struggle with the health-care system. They must negotiate persistently with providers and agencies to secure needed support for their caregiving activities. For instance, in a single day, a family caregiver might need to keep calling the physicians ofce for advice when her husbands nausea is uncontrolled, face conict with an oxygen supply company that delivers the wrong equipment, and speak to the manager of a pharmacy that has informed her that insurance will no longer cover one of her husbands medications.

Caregiving Consequences
Stetz and Brown (1997) describe two major consequences of taking care: personal suffering and coming to know ones own strength. Personal suffering involves the sense of being alone, putting ones life on hold, experiencing mental and physical symptoms of stress, and anticipatory grieving. Caregiving is an isolated task in our busy society where most people are working outside the home and evenings are lled with activities outside the home. Discomfort with illness and dying leads many people away from visiting. The caregiver suspends his or her personal or professional life for periods of weeks to years. Stress and grief take their toll on physical and emotional well-being. There are also positive consequences of taking care, which include coming to know ones own strength. Knowing ones own strength involves learning to live day-to-day, becoming a patient advocate, learning to care for oneself, gaining caregiving competence, and ultimately feeling stronger as a person. For instance, a 19-year-old daughter who had been estranged

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from her gruff father since she left home at age 16, moved back home to care for him physically during his last weeks of life. The hospice team actively supported her. After his death, she told the hospice nurse, I never knew I could do anything this hard. My grandparents cant stop telling me what I good job I did. Now Im going to go back to school to actually do something with my life!

Internet Reference Box For more information on caregiving, access the American Medical Associations caregiving assessment questionnaire and the National Alliance for Caregiving at: http://www.ama-assn.org/ama/pub/category/5037.html http://www.caregiving.org.
WWW.

NURSING INTERVENTIONS: STRENGTHENING THE FAMILY


Nurses can guide families by assisting with their transition and redenition, developing their capacity as caregivers, making connections between family members, and recognizing limitations. Having gained these new abilities, skills, and connections, families become stronger and better able to deal with crises.

Guiding Families through the Transition


Although redenition is an essential dimension in the transition process described by Davies, each family member is likely to redene the patient, relationships, and responsibilities at a different pace. You need to listen repeatedly and recognize that they must let go of old orientations and hopes at a pace each can handle. You need to let go of your agenda about what would be best for them. Each family member needs individual attention, which may require referral to other disciplines and resources. Practical guidelines to counsel families through the transition include: Explaining normal grief, normalizing the difcult feelings of grief Listening to expressions of grief Focusing on intact abilities and ways the family can sustain normalcy Helping the family with prioritizing and role changes Helping the family with coordination of resources Helping family members to continue with their own lives Mobilizing resources so that each family member gets attention Encouraging expression of choices and preferences Encouraging life review, reminiscing about meaningful past events

For instance, a nurse helping a family with prioritizing might sit down with Marianne, an exhausted single mother who has taken her dying sister Judith into her home to provide care. Together they rank Mariannes daily

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responsibilities in importance and determine which activities she can discontinue and which she can delegate. She decides to give up remodeling projects and handmade Christmas presents. She will stop cleaning her teenaged childrens rooms and will accept their offers to make dinner. She decides to ask for help from church members, who have offered to sit at Judiths bedside so that Marianne can get out to exercise and go to the store. Helping family members to continue with their own lives, the nurse encourages Marianne to ask for volunteers to drive so that her children can continue with after-school sports. Together they consider whether Marianne should ask a retired aunt to care for Judith 3 days a week so that she can return to work part-time. Finally, for example, the nurse discusses ideas for life review with Marianne. Marianne decides to ask Judith whether she would enjoy putting together a photo album with journal entries about their childhood in rural New England.

Developing Family Capacity as Caregivers


Nurses working in home health and hospice work directly with families at home, so their role in training family caregivers is critical. Nurses in hospitals and medical ofces also can help strengthen family members abilities as caregivers because there is limited access to community-based nursing and many patients are returning home to struggle with severe end-stage illness. All teaching must be adapted to readiness to learn. Emotions are so overwhelming at the end of life that the learning process can be severely limited. Many times the family simply cannot hear what is said. Approach teaching with patience; use a lot of repetition and take steps slowly. Learning takes time. One nurse explains her approach to a family caregiver frightened of technology, I couldnt just run in with the pump. First we got her to touch it and hold it and know it wasnt going to explode. Other families may be anxious for as much information as possible: In that family conference I discovered very organized controlled sons who wanted to know everything and have it written down. They taped our conversation to replay so that everyone would get the same information. They were very hungry for information about what to do to keep Mom comfortable. Teaching caregiving requires multiple methods and exible approaches. Some of the strategies you can use include translation, drawing pictures, systematic instruction, convincing argument, demonstration, modeling, and trial and regrouping. See Box 11-5, Teaching Strategies at the End of Life. Learn to translate medical knowledge to human terms. You can explain the disease process in simple language. Describe end-of-life symptoms as normal and predictable. Likewise, explain the range of feelings associated with grief and loss in human terms. Translation skills also involve considering how to modify medical procedures for the home. For instance, what

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Box 11-5

TEACHING STRATEGIES AT THE END OF LIFE

Translating medical knowledge to human terms Drawing pictures Systematic instruction Convincing argument Demonstration and role-modeling Trial and regrouping

compromises can be made regarding asepsis or wound dressings? What compromises pose risk for complications? All experienced visiting nurses have stories about how patients and families push the envelope regarding what we would consider acceptable in the hospital or nursing home! Nurses translate medical knowledge to human terms that help families cope. Sometimes words are not enough. Consider nding pictures or drawing pictures to illustrate essential ideas and train caregivers in providing technological care. Picture Challenges She was one of my picture challenges. She had absolutely terrible circulation. Her hands and feet were always dusky. She started getting pedal edema and some breakdown on her feet. She just didnt understand what was happening. I did a lot of picture drawing to explain. She was afraid of taking narcotics. I drew a picture of how the tumor was pressing on her nerves. I nd drawing pictures can be really effective. I have a catheter picture down pat. I show where it goes, how it works, and what the catheter balloon does to keep it in so you dont have to worry about losing it or having urine all over your oor. Question and answer, in contrast to simply proffering information, is essential to teaching home caregiving. You explain, search for understanding, and they repeat and question. The teaching process should feature an ongoing dialogue instead of a lecture by the nurse authority. Always leave time for clarication and further clarication. Follow the family lead. Avoid asking them questions that can be answered simply with yes or no. For instance, after reviewing a medication regimen, dont ask, Do you understand? Instead, teach one medication at a time and then inquire, Now lets go over what this is good for and how to use it. How would you summarize what I just said? Validate that they have grasped the essentials and repeat as needed. Family caregivers often need extensive systematic instruction to provide home nursing:

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I did a lot of teaching. Mark learned to manage the pump. We taught him to do the dressings around the epidural. He knew how to watch for redness and inammation. We trained him in bowel management, to get plenty of p.o. medications or give her a suppository or enema. We taught him how to position her, what to do for skin care. He learned to do personal care for the Foley catheter. Sometimes families need convincing about some aspect of palliative care: Every time I went there I felt like I was on the hot seat. I went through Double Jeopardy. Did I win or lose? I never knew if the answers I gave were the ones they wanted. They were trying to make sense out of what happened and whether they believed in hospice. They wanted information. I felt like I was proving myself to them. I start early to plant seeds about morphine as our friend. You really have to confront peoples mindset about addiction. I emphasize that it will prevent their family member from struggling and suffering. Demonstration and role-modeling are powerful tools as well. You are demonstrating when you invite family members to watch you providing care, and then to practice what they have learned as you watch and coach them. You turn and position the patient, and then you invite the family members to do the same. Then you give them feedback. You role-model gentle touch to calm the patient, and then ask the husband to try it and see that his wife becomes quiet and relaxed. You role-model touching and speaking to the unresponsive patient as you bring the family to the bedside to do the same. To enable the family to provide care at home when death is imminent, you prepare them by explaining normal processes at the end of life and how to manage any disturbing symptoms that develop. As alertness diminishes, the patient will become bedridden and is likely to need around-the-clock care. You might prepare the family for the nal course of events by saying, At the very end, people stop eating and drinking when the body can no longer handle food and uids. We dont need to force uids on him. He cant swallow. Well keep his lips moist. His breath and circulation are going to slow down. There might be a rattle from mucus in his chest. We have medicine to keep him comfortable. Ill show you how to use it. Often sustaining family capacity involves trial and regrouping. For example, you might encourage the family to try caring for their loved one at home for a 1-week trial period during which the hospice team and concerned family members are all mobilized to help. After that week, the plan is reexamined, resulting in alterations to the home care plan or a move to a skilled nursing facility where the hospice team visits. An expert nurse explains how she proposes a trial intervention using a convincing argument: You dont know if it will work if you dont try it. You know, I had a patient in a similar situation and it helped a lot. If it

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Box 11-6

MAKING FAMILY CONNECTIONS

Encouraging open communication Being present so family members can discuss difcult issues Interpreting family members to each other Getting family members together Acting as an intermediary between family members who are not communicating

doesnt work, well think of something else. How do you feel about that?

Making Connections Between Family Members


Expert end-of-life nurses are often able to help family members communicate with each other. We can do this by encouraging individuals to communicate, being present so family members can discuss difcult subjects, interpreting family members to each other, gathering family members together, and acting as an intermediary between family members who cannot speak to each other. Box 11-6 outlines Making Family Connections. Encouraging Individuals to Communicate You should encourage family members to say what they need to say to each other. We do not tell them what to say, but instead encourage them to talk about difculties, express emotion as culturally appropriate, and plan together. People who love each other are often so engaged in protecting each others feelings that they avoid talking about anything difcult. We advise them to speak the difcult words that they long to say.

You should encourage family members to say what they need to say to each other. We do not tell them what to say, but instead encourage them to talk about difculties, express emotion as culturally appropriate, and plan together.

Being Present So Family Members Can Talk Often the words are too painful, and so the very presence of nurses or other team members can facilitate talking. When someone else is there encouraging expression, it can feel safe for those who dont know how to speak troubling words: Nobody was communicating until I got there. I got them all together and helped everybody to start talking. Its a victory to see

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something not working at all, and then to pull it together so that the family starts working together. I asked him to tell his partner what he was afraid about. I asked his partner to tell him what he was afraid of. They were so protective of each other. They just hadnt been able to talk about it. I facilitated their conversation. Interpreting Family Members to Each Other The nurse can often be helpful by interpreting one family member to another. Because of an understanding of illness and human responses, the nurse can offer explanations for troubling feelings and behavior. In particular, you can help each person understand the normalcy of feelings like anger, depression, and avoidance. For instance, you could explain normal adolescent grieving behavior to a mother caring for her dying husband. Her adolescent son has been escaping frequently to his friends houses, which she thought meant that he doesnt care about his Dad. Likewise, you can help family members understand the effects of disease on the mind and behavior of those they love. I met the mother on the porch and explained the dementia and the fact that he was no longer capable of making decisions for himself. You can help them understand that the behaviors and communication patterns of a lifetime are unlikely to change at the end of life. A nurse explains this to a young woman dying of breast cancer who is disappointed with her father: Maybe your father just cant do it. You want him to be at your bedside holding your hand and saying its okay honey and I love you. Hes got all that grief locked inside him since your mother died. Hes never talked about feelings and he just cant do it. She got my point and after that, she accepted her fathers limitations. Gathering Family Members Together Often, we are able to bring family members together to talk to each other when there are difcult decisions to be made or when death is close. They might meet by themselves at our urging, or we can facilitate a family meeting in the kitchen, living room, or bedroom. Frequently, family meetings are organized in close collaboration with social workers: Marlene, the social worker, and I organized a family conference with the patient, all his kids, and one of the grandsons. They told him it was okay if he wanted to quit his tube feedings. We talked

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about children and grief and about having young kids in the house where someone is going to die. They felt pretty good about that. I taught them what symptoms to expect at the end of life and how hospice would help. They used this as an opportunity to state that it was not all right for him to shoot himself. He agreed they could take the gun.

Acting as Intermediaries Finally, expert nurses describe their role as intermediaries when family members are unable to speak to each other. This role usually arises when there is a need for care and/or decisions but the family members who need to provide the care and make the decisions have been estranged. Following is a particularly vivid example: I had to go up and take care of Dan and then downstairs to talk to Marge. I felt like I was a go-between for these two, trying to get them to talk. They both loved each other. I was listening to each one and then trying to get them to talk about the issues and concerns with each other. Dan wanted hospice and she wanted a full code and to keep him alive as long as possible. I tried to get them to nally be able to talk directly to each other again.

Recognizing Limitations
Families are unique and each responds to dying in a unique way that is consistent with its own history and beliefs. Sometimes that way is not consistent with our own hopes for them. In this example, a nurse learned from facing obstacles with a complicated alcoholic family: I kept trying to get them to do things the way I thought it should be done. I could never relax and nally had to give the case to someone else. Since then, Ive learned that when families do unhealthy things, Im able to point it out to them, but it doesnt make me crazy when they dont change. I give them a lot of leeway in how they do things, and I dont feel like I have to x them. Some families may not be able to organize themselves, to listen to each other, to forgive, or to open themselves to outsiders. When someone is dying, their difcult history rears up and the nurse nds herself or himself caught in the middle. We witness their suffering; we offer what we can to help. We make suggestions. Then it is up to the family to choose. When they reject most of our help and advice, we must set clear limited goals and realize what we can and cannot accomplish. Often we need other health team members to help draw boundaries.

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CONCEPTS
Ron Trader

IN

ACTION

Consider Ron Traders situation. Ron, age 43, was diagnosed with a particularly dangerous kind of brain tumor, a glioblastoma, that has not responded to two surgeries, chemotherapy, or alternative therapies. He and his rst wife, Luanne, divorced 3 years ago. She left him and their two children, Sarah and Jason, to pursue a romance that has now turned into a marriage. For 2 years, Ron managed as a single father until Luanne returned to town and began to share some responsibility for parenting. Ron is newly married to Marge, who also has two children, Hannah and Lucy. Now they are living as a newly blended family of husband and wife and four children, two of whom come and go to spend time with their mother. Rons parents live nearby and are in their 70s; his mother Helen is caring for his father George, who has Alzheimers. She is also coming over daily to help with Rons care. Marge is trying to hold onto her job as schoolteacher, but Rons physical and mental status is rapidly declining. The four children are ghting constantly. A couple of them are falling behind in school; one has been caught stealing. Rons mother is exhausted and his father has now developed cardiac arrhythmias. Sometimes she snaps at Ron when he forgets what he is doing. Rons close friends are coming over to provide some caregiving relief, but this is challenging their abilities since he can no longer walk and is incontinent. There is great strain every time his rst wife comes into the house. She tends to nd fault with everything from Marges housekeeping to her failure to discipline the out-of-control children. Marge keeps apologizing and proclaims, Im just no good to anybody right now. I cant think straight. Draw a genogram for Ron Traders extended family. What coping style do Luanne and Marge use when stressed? Consider the impact of Rons dying on each family member. What are the needs of each? Rons wife and his mother are his primary caregivers. How can you respond to their needs? Both caregivers are having trouble providing physical care as Rons level of consciousness has plummeted. What would you recommend to them? What teaching strategies would be particularly important? How might the nurse promote connections between family members?

References
Brazil, K., Bedarde, M., & Wilson, K. (2002). Correlates of health status for family caregivers in bereavement.

Journal of Palliative Medicine, 5(6), 849855. Davies, B. (2001). Supporting families in palliative care. In B. Ferrell & N. Coyle (Eds.), Textbook of palliative

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nursing (pp. 363373). New York: Oxford University Press. Davies, B. (2000). Anticipatory mourning and the transition of fading away. In T. Rando (Ed.), Clinical dimensions of anticipatory mourning (pp. 135153). Champaign, IL: Research Press. Haley, W., LaMonde, L. A., Han, B., Narramore, S., & Schonwetter, R. (2001). Family caregiving in hospice: Effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. The Hospice Journal, 15(4), 118. Hanson, S. M. H., & Boyd, S. T. (1996). Family health care nursing: Theory,

practice, and research. Philadelphia: F.A. Davis. Hunt, C. K. (2003). Concepts in caregiver research. Journal of Nursing Scholarship, 35(1), 2732. Larsen, L. (2002). Facing the nal mystery (p. 84). First Books Library. Minuchin, S., & Fishman, H. C. (1981). Family therapy techniques. Cambridge, MA: Harvard University Press. Satir, V. (1988). The new peoplemaking. Palo Alto, CA: Science and Behavior Books. Stetz, K., & Brown, M. (1997). Taking care: Caregiving to persons with cancer and AIDS. Cancer Nursing, 20(1), 1222.

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C H A P T E R

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Children Facing Death


Philosophical Reections Freddie found himself losing his color, becoming brittle. It was constantly cold and the snow weighed heavily upon him. At dawn the wind came that took Freddie from his branch. It didnt hurt at all. He felt himself oat quietly, gently and softly downward.
BUSCAGLIA, 1982, THE FALL OF FREDDIE THE LEAF

Learning Objectives 1. Identify childrens normal grieving behaviors from toddler to adolescent. 2. Explain helping strategies for grieving children of each age group. 3. Describe unique ways of helping grieving children that include play, creative arts, literature, and ritual. 4. Identify common dying pathways for children. 5. List essential features of palliative care for children and barriers to its implementation. 6. Explain palliative psychosocial care for children and their families. 7. Discuss unique aspects of providing physical comfort for dying children. 8. Develop a palliative care plan.

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Strengthening the family while a family member is dying is a branch of family caregiving at the end of life. This chapter discusses the unique dimensions of strengthening families when children face their own death or the death of a loved one. Children today seldom experience another persons death, especially that of a parent or sibling. Likewise, only a small number of children die in contemporary America. The death of a child challenges our understanding of the natural order. This chapter examines childrens perceptions of death, grief, and coping in children and adolescents, and ways of helping grieving children. The chapter then shifts to look at children and death from a different perspective. It discusses contemporary causes and circumstances of children dying, palliative programs for children, and the psychosocial and physical needs of dying children and their families.

CHILDRENS PERCEPTION OF DEATH


In the past, children died frequently. Before the middle of the 20th century, only a small number of children from large families survived into adulthood. Death was swift from infectious disease and accidents. As a result, traditional childrens stories, games, prayers, and rhymes are lled with death. Consider this circle game played since the plague years of the 15th century when one by one people fell down and turned to ash. Their only defense was to hold onto one another (Kastenbaum, 2000): Ring-around-the rosey. Pockets full of posies. Ashes, ashes. We all fall down. Or consider the words of the traditional American lullaby, another reminder of frequent child mortality: Rock-a-by baby in the treetop. When the wind blows, the cradle will rock. When the bough breaks, the cradle will fall. And down will come baby, cradle and all. However, in contemporary America, children are often unprepared to face death. The child mortality rate is much lower and children commonly experience deaths of loved ones when they are older themselves. Death is seldom discussed. The death of the family pet or seeing a dead animal is usually the rst experience. Children generally can recognize death by the time they are 3 years old (Faulkner, 2001). They rst recognize what death looks like. Then, they begin to consider the effects of death on ability to function. Preschool children do not understand that death is nal, however. As school-age children develop cognitively and emotionally, they grow to realize the impact of death, and nally they consider their own death and that of family members and other people in society. They gradually realize

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Box 12-1
AGE

CONCEPTIONS OF DEATH FROM EARLY CHILDHOOD TO ADOLESCENCE


UNDERSTANDING AND FEELINGS Cannot differentiate between death and separation Believe death is reversible Experience separation anxiety Concerns expressed by crying Come to understand that death is irreversible and nal For younger child, death appears equivalent to sleep or going on a trip May believe they can cause death May have anxiety about separation and sleep Understand that death is irreversible and universal Developing logical thought, realistic understanding of causes of death May perceive human death as punishment Continuing concerns with separation Now have abstract understanding Death may be perceived as heroic or tragic Death associated with old age Commonly dislike showing emotion May choose escapism, denial, acting out

Birth to Age 2 to 4

Age 4 to 6

Age 7 to 1 1

Age 12 and adolescent

Source: From Faulkner (2001); and Oltjenbruns (2001).

that death is permanent, universal, and inevitable for everyone, including themselves. See Box 12-1, Conceptions of Death from Early Childhood to Adolescence.

CHILDRENS GRIEVING
Signs of grief are initially apparent around the age of 2 years, when the child has observable responses to separation from a parent. Normal childrens grief is manifested as somatic, psychological, and behavioral (Oltjenbruns, 2001). Somatic symptoms include difculty sleeping and eating, wetting the bed, sleep disturbances, headaches, and stomachaches. Psychological symptoms include separation anxiety, loneliness, guilt, fear that others will die, fantasizing about death, learning difculties, and school problems. Behavioral symptoms include crying, emotional outbursts, temper tantrums, extreme

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shyness, disinterest in playing, demand for attention, overdependence, and acting out. Acting out, for example, is a result of the anger the child feels because the parent or sibling cannot be brought back, and life is dramatically changed. Behaviors include arguing, disobedience, demands for attention, stubbornness, and aggressive anti-social behaviors, particularly in adolescents. These reactions are common right after death; however, some symptoms may not appear until as long as 2 years later, as the child comes to recognize the loss. Childrens grief is inuenced by the kind of pre-death relationship the person had with the child, the nature of the death, the health and reaction of surviving parent(s), and the childs preexisting psychological difculties. Emotional health of the family predicts a childs healthy adaptation to loss because a healthy family is able to provide a stable, loving environment that minimizes fear and promotes child growth. Recent studies do not reveal an increased risk of future depression for those who experienced a parent dying while they were children (Oltjenbruns, 2001). As children who experienced death at very young ages move into more mature developmental stages, they may examine the death from a different perspective than was possible earlier. They may revisit grief periodically as they develop. This is called the re-grief phenomenon. A preschooler misses a father as caregiver and provider. Then, later in adolescence he may wonder how his life would be different if his father was there to play baseball and take him hiking. Grief surges again as he misses his father as role model, a man to tell me what to do. Childrens grief is often misunderstood. See Box 12-2, Myths about Grief in Children and Adolescents. Children grieve at any age, but it is manifested very differently depending on developmental stage. Children should not be shielded from death. They cannot be protected from inevitable loss without deception, which they can detect quickly. It is better to support and include

Box 12-2
1. 2. 3. 4. 5. 6. 7. 8.

MYTHS ABOUT GRIEF IN CHILDREN AND ADOLESCENTS

Children do not grieve. It is better to shield children from loss. Children should not go to funerals. Children should always attend funerals. Children recover from loss quickly. Children are permanently scarred by early loss. Talking with children is the most therapeutic way to help them cope. Helping children and adolescents cope with loss is the sole responsibility of the family.

Source: From Doka (2000).

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them in age-appropriate ways. Childrens ways of coping are determined by their developmental stage and the tasks needed to be accomplished at each stage (Oltjenbruns, 2001). For example, children should neither be forced to attend funerals nor prevented from attending them. When they are old enough to do so, children should be able to choose their role in such rituals after death. Although children do not recover quickly, death of a loved one does not scar children permanently. Grief from signicant loss resolves slowly and frequently recurs. Yet children are remarkably resilient when given strong support. Talking may not be the most effective way of supporting them. Play, creative activities, and ritual have a vital role in fostering expression. Childhood grief is a great family burden, which should not be borne alone without support of the community at large, including schools and faith communities.

Childrens ways of coping are determined by their developmental stage and the tasks needed to be accomplished at each stage (Oltjenbruns, 2001).

It is important to understand and recognize symptoms of grief at the different levels of child development. The following section, which summarizes a study of childhood bereavement by Grace Hyslop Christ (2000), sheds some understanding on death and grief behavior in children of different ages. She identies helpful interventions for each age group as well.

Ages 3 to 5 Years
Preschoolers cannot understand the signicance of a terminal illness. They react strongly to separation from the sick parent and can become overwhelmed by their parents intense emotions and loss of control. They have great difculty understanding that death is irreversible. For months afterward, they may ask when the loved one is returning. They need repeated concrete explanations of what has happened. They may develop symptoms like intense separation anxiety, stomachaches, bed-wetting, whining, temper tantrums, and fretful sleeping. Helpful interventions for preschoolers include: Strengthening the parents ability to provide support for the child by realizing the childs need to stay close to the parent Using simple explanations and providing opportunities to ask questions Recognizing that expression of strong feelings can frighten the child Using play and drawing to express feeling Preparing for regressive symptoms after death and expecting the child to need to talk frequently Referring for counseling those children with persistent difculty playing; persistent fears; aggressiveness; difculty separating from the parent; preoccupation with dying; and regression in toilet training, eating, or sleeping

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When Dinosaurs Die, written for preschoolers and young readers, describes feelings about death and illustrates childrens reactions with various quotes from dinosaur children (Brown & Brown, 1996, pp. 12, 1415): Its not true. Grandma isnt dead. She is too. Im not hungry. My tummy hurts. Will I get sick and die like Cousin Boris? Preschoolers need triggers to help them talk. In addition to reading childrens books about death, many activities may help them to remember and talk. For instance, taking them to visit the grave, giving them keepsakes to treasure, looking at photograph albums, or planting a tree or bush in honor of the person may bring back memories and encourage children to talk.

Planting the Seeds In early childhood, grieving children need to be kept close to their parents and other family members. They have trouble understanding that death is permanent. Encourage family to maintain familiar routines and promote expression through play. Help families understand normal grieving for this age, such as regressive behavior and development of physical symptoms.

Ages 6 to 8 Years
Young school-age children are usually aware of serious illness and react intensely with anger, anxiety, fear, and sadness. They may become demanding, stubborn, and clingy. They understand that death is permanent, but they may reach the illogical and guilt-inducing conclusion that they are responsible. When told of a parents death, their reactions may cover the gamut, from screaming to no response at all. Usually they are quite direct in expressing feeling, but they express intense feelings only briey and then may want to return to school and playful activities. Helpful interventions for young school-age children include: Remembering that parental support is central Joining with the parents to inform them of the parents illness and when death is imminent Sharing controlled expression of emotion so that they are not overwhelmed Encouraging continuation of developmentally appropriate activities Encouraging participation in traditional rituals Not being surprised by a childs brief episodes of mourning alternated with desire to return to normal activities Communicating with school personnel

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Referring for counseling those children living with persistent anxiety, depression, low self-esteem, or thoughts of suicide Tommie was 8 years old when his father was killed in an automobile crash. Tommies initial reaction was to scream and throw a tantrum. Then he turned back to his videogame. His mourning seemed to come in waves. He wore his dads Red Sox cap everywhere, even in bed. In the rst few weeks, he resisted going to school every morning and resisted going to bed at night. Sometimes he wet his bed. In the evening, he never let his mother out of his sight. His uncle started taking him to Little League practices, which he loved.

Planting the Seeds Young school-age children need truthful information with concrete details. They need to stay close to family. Encourage play dates and normal activities. Help family to understand normal grieving behavior for this age group, including intermittent periods of grief and forgetting.

Ages 9 to 11 Years
Preadolescents are rapidly developing their capacity for logical thinking. They are conceptually able to understand the implications of terminal illness. Their world is expanding outside the home, so that they have chances to distract themselves from parental dying and death. They are now able to control expression of feeling, so that they can restrain their reactions to the point of appearing callous and indifferent. They fear being overwhelmed by grief and so may not talk about it and choose to escape into activities. When they do grieve, they express a range of feelings similar to adults, including anger and sadness. For months following the death, many have difculty paying attention at school. Helpful interventions for preadolescents include: Giving them information as soon as it is known about diagnosis and prognosis Encouraging participation in care of the patient Involving teachers Encouraging involvement in after-school activities Encouraging participation in rituals after death and activities that remember parent Structuring family activities and returning to predictable routines Referring for counseling those children who do not return to previous levels of functioning in school, activities, and peer relationships Jeanine was 10 when her single mother was diagnosed with an inoperable brain tumor. She threw herself into basketball and swimming, but her

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grades deteriorated. Her grandmother called the school when her mother died, but Jeanine insisted on staying until the end of the school day. Several friends went with her to the funeral home to view her moms open cofn, but she refused to get too close. For several months afterward, she argued frequently with her grandparents, who adopted her. Sometimes they heard her crying softly in her bedroom, but she never mourned in public. She gradually immersed herself in after-school sports and her grades bounced back.

Planting the Seeds Preadolescents should be involved with decisions and encouraged to ask questions. Family needs to understand that these young people should have as much control as possible within boundaries that include clear expectations. Teach the family to understand normal coping behaviors of preadolescents, including apparent indifference, intense peer involvement, and oppositional behavior.

Adolescents 12 to 14 Years
Young adolescents are conicted by their own need to develop independence from their parents and the intensied family needs for help and emotional closeness. They are quite self-centered. They may withdraw emotionally and have exaggerated needs for privacy. They may go to great lengths to avoid feelings and to express indifference. They withdraw into themselves and escape with peers. This apparent callousness can be extremely troubling to family members. It is not unusual for the grieving young adolescent to test limits by acting rebellious. Helpful interventions for young adolescents include: Providing detailed information Understanding their emotional withdrawal as developmentally related Allowing them to help but limiting caregiving tasks that may be excessively burdensome to a child so young Helping them express grief Letting them choose their role in rituals after death Supporting their desire to return to normal activities Setting limits on destructive behavior Referring for counseling those teens with clinical depression, suicidal thoughts, fears and phobias, refusal to attend school, withdrawal, use of alcohol and drugs, aggressive behavior causing injury, regression to childish behavior, and somatic symptoms that do not disappear

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Andy was 14 when his 6-year-old sister died quickly from acute leukemia. He walked out of the room when his mother told him his sister was dying, but not before challenging her by yelling, You dont know what youre talking about! Following her death a week later, he agreed to carry her cofn into the church and to participate in the church service, but then he disappeared to a friends house immediately afterward saying, Our bands got to practice. In the weeks afterward, his mother smelled alcohol and marijuana on his breath and clothing. She sought counseling to learn how to set limits and found a counselor for him to express his grief through music therapy.

Adolescents 15 to 17 Years
Middle adolescents have become capable of abstract thinking that allows them to comprehend the realities of death and its impact. They are also growing in empathy and capable of deepening personal relationships. Therefore, they nd it difcult to distract themselves with activities and friends. During the illness and in bereavement, they can be expected to function poorly in school and activities. Their mourning behavior is similar to that of an adult. However, they can also externalize their grief by episodes of anger, argument, drinking, and escape from the home. Helpful interventions for middle adolescents include: Informing them fully about illness and prognosis Anticipating some withdrawal from normal functioning Discussing ways they can be helpful Involving them in rituals after death, in roles they choose Anticipating intense mourning and helping them understand the process Communicating with the school Anticipating conict around responsibilities and the need for independence Helping them identify a positive legacy of the deceased person Referring for counseling those teens with severe symptoms including severe withdrawal, depression, destructive acting out, severe aggression, problems in school, and eating problems

Planting the Seeds Adolescents need clear, honest communication. Recognize that they have strong needs for independence and control. Teach family about normal grieving behavior including emotional withdrawal and the need to identify with peers.

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WAYS OF HELPING GRIEVING CHILDREN AND ADOLESCENTS


Children and teens have a limited ability to explain their feelings with words and are often able to express those feelings through play, creative arts, ritual, and reading together.

Using Play with Grieving Children


Play is a natural medium for children to express their feelings. Play is the way that children work through their experiences, express themselves, cope with anxiety, and develop skills (Brown, 2001). Play allows children to feel some control over their world. Whether it is facilitated by adults or not, children will express their grief through play activities. Play offers a diversion from fear and anxiety, and can help children release pent-up feelings. Play can be used by parents, nurses, other health professionals, and play therapists to support grieving children. Play materials might include: Dolls, action gures, puppets Toys that re-create life, such as doll houses, telephones, doctor kits Aggression release activities like beating drums, punching bags, kicking balls, running, and hammering Construction toys Games Jay is 5 years old. Last year, Jays dad committed suicide. Since then, his preschool behavior has become unmanageable and aggressive. Jay and his mother have been visiting a family therapist who does play therapy. Jay chooses male and female action gures who take trips along highways or in space. The male action gures repeatedly have crashes and Jay throws them on the oor. Whenever they crash, he and the therapist talk about how the boys always get killed. Daddy got killed.

Play is a natural medium for children to express their feelings. Play is the way that children work through their experiences, express themselves, cope with anxiety, and develop skills (Brown, 2001).

Using Creative Arts with Grieving Children and Adolescents


The arts provide a medium for children and teens to identify and express their feelings (Webb, 2000). Artwork can be used by parents, nurses, other health professionals, and art therapists with special expertise. Many hospital pediatric units offer art and music therapy for seriously ill children. Hospices sometimes offer creative art programs for children with dying siblings or parents, and for bereaved children. A growing group of counselors offer art and music therapy for children in the community living with grief. In

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encouraging childrens creative expression, it is important not to correct artwork or expect it to be beautiful. The adult should show interest, refrain from interpretation, and ask to learn more about what is created. Some creative arts examples include: Drawing and painting Drama Making up songs and changing the lyrics in songs Playing musical instruments like drums or triangles Writing poetry and stories Pounding and sculpting clay Making collages

These and other creative activities help children understand the loss, express feelings, commemorate the death, and discover ways to go on with their lives.

Using Ritual with Grieving Children and Adolescents


Rituals are solemn acts or ceremonies. Death rituals include memorials and funerals, as well as private acts that give meaning to the death and offer the comfort of people drawing together in mutual support. Funerals and public memorials directly confront the loss and give the death meaning within the community. Once children are able to understand and sit through a funeral ceremony, they should be given the choice to be present and to participate (Doka, 2000). They can select music and readings. They can write letters and draw pictures. For example, after the funeral of an environmentalist from the Pacic Northwest, his school-age children distributed r seedlings to all guests present. Private rituals might be as simple as looking at picture albums every Saturday, remembering Daddy before every dinner, or lighting a candle in his memory at each family gathering.

Planting the Seeds If a parent asks you whether children should attend the funeral, rst explore what that parent is thinking. In deciding how to respond, respect the persons values. Parents may wonder if children need to be protected from mourning expressed during the service. Remind them that the children are experiencing their own grief and should not be isolated at this time. Reinforce the value of involving children in traditional ritual and community support to relieve their own suffering. They should not be left out. If possible, they should be given the choice to participate in services.

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Using Childrens Literature


The literature for grieving children and adolescents is growing. Many books are available for each developmental level. Consider the following in assessing books for the purpose of helping a grieving child (Doka, 2000): Evaluate the book for its t with the particular child and select titles that t individual needs. Examine the limitations of the books explanations. Are they helpful and consistent with the familys values? Match the book to the concerns of the individual child. Read and discuss together.

Internet Resource Box Books for and about children and grief are identied in www. compassionbooks.com. Books and activities for children 12 or younger and 13 or older are found at www.dougy.org. This is the Web site for the Dougy Center, the National Center for Grieving Children and Families. Also included is advice for parents of grieving children.
WWW.

DYING CHILDREN
Death rates in children have dropped dramatically so that children now constitute only 2% of all deaths reported annually, approximately 55,000 children (Institute of Medicine, 2003). Causes of death differ for different age groups: Infants from birth to age 1 year are at greatest risk of mortality. Leading causes are congenital abnormalities, low birth weight and immature body organs, sudden infant death syndrome, complications of pregnancy, and respiratory distress syndrome. For children 1 to 9 years, leading causes of death include unintentional injuries such as drowning and motor vehicle injury, congenital abnormalities, cancer, and intentional injuries (murder and suicide). For youth age 10 to 19, dominant causes of death are unintentional and intentional injuries, cancer, and heart disease. Because of medical advances, there is a signicant group of children living with complex chronic illness who can be expected to need care for years before they die in childhood. The rates of childhood death from causes such as injury and low birth weight are higher among people living in poverty. African American children have a higher mortality rate at all ages (IOM, 2003).

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Pathways and Prognoses


The course of death in children varies dramatically and can be explained by identifying four different pathways: sudden death, death from a potentially curable disease, death from a congenital abnormality that is lethal, and death from a progressive condition (IOM, 2003). Sudden unexpected death occurs with sudden infant death syndrome or a fatal injury. For example, a childs lifeless body is found in her crib or a child is struck by a car or killed by a bullet. The survivors have no chance to say good-bye. Their grief is often intense and complicated. Death from a potentially curable disease often involves an initial positive response to treatment, followed by the return of the disease and eventual failure of all curative therapies. Often, preoccupation with therapies overshadows any discussion about death as a possible consequence. Comfort may be forgotten in the increasingly desperate rush to cure. Some infants are born with problems that are incompatible with survival; they live only briey. This includes infants with severe congenital anomalies and extremely premature babies. Comfort for parents and infant should be the predominant concern. Finally, there is the extended pathway of children suffering from progressive conditions, such as degenerative neuromuscular disorders. The child repeatedly survives one crisis after another, often growing into adolescence and young adulthood, until a resuscitative effort fails or is rejected as too burdensome. The long-term emotional, physical, and economic burdens on families are immense. Caregiving systems that have focused on long-term illness may not be ready to provide end-of-life care. The team that may have worked with the child for years is trained and organized to maintain physiological functions aggressively, despite the futility of such activities.

Palliative Care for Children


Children often suffer needlessly at the end of life. In a study of parents perceptions of their childrens deaths from cancer, 89% described their children as suffering a lot or a great deal from at least one symptom (Wolfe et al., 2000). Medical professionals focused on aggressive treatment, including ventilatory support, and did not address suffering adequately. Essential Features of Palliative Care for Children Pediatric palliative nursing focuses on the child and family at the center of the care plan (Feeg, Miller-Thiel, and Will, 2001). The nurse recognizes emotional suffering throughout the course of a life-limiting illness, translates medical information to parents and children, collaborates closely with other members of the health-care team, and advocates for family and child wishes. She recognizes the uncertainty and fear that the family experiences from diagnosis through aggressive therapies. She advocates for compassionate

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comfort care throughout the course of treatment, not just when the child is nally identied as terminally ill. The American Academy of Pediatrics proposes an integrated model of palliative care for children, with a focus on comfort and psychosocial support, from diagnosis of life-threatening illness throughout all the efforts aimed at cure (AAP, 2000). Children should have simultaneous palliative and curative care, according to this model. This integrated model seeks to relieve emotional and physical distress from the very beginning. The minimum standards proposed by this group of pediatricians include the following: Continuity of care by a consistent physician Availability of support 24 hours a day, 7 days a week Interdisciplinary care from a physician, nurse, social worker, spiritual counselor, and child-life therapist Care coordination from tertiary care medical center into the local community Home nursing Respite for families to take breaks from intensive bedside care Chronically ill dying children can be treated effectively for many years, but treatment often requires multiple technologies and intensive bedside care. As they grow into school age and adolescence, these children need attention to developmental needs. They need to play. They need to achieve in school and in activities outside of school. In adolescence, they need to have a sense of independence and control. Thus, caregivers are involved in the paradoxical task of promoting growth while preparing for death.

Internet References Box See the Texas Childrens Cancer Center End-of-Life Care for Children Web site at www.childendoifecare.org. See the Initiative for Pediatric Palliative Care at www.ippcweb.org/initiative See the Childrens Hospice International Web site at www.chionline.org.
WWW.

Barriers to Palliative Care for Children Barriers to palliative care for children include the compulsion to save life, parents lack of information, lack of insurance to cover needed services, and inadequacy of the hospice model for children. The belief that children should not die is a persistent barrier to preparing for the death of a child. Parents usually desire every medical option to save or lengthen their childs life. Professionals likewise are committed to saving childrens lives. Thus, parents and professionals commonly focus on survival at all costs. Acceptance that cure or meaningfully prolonged life is not possible is painful and difcultso difcult that some clinicians and parents may not recognize that they are pursuing treatments that bring suffering without benet (Institute of Medicine, 2003,

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p. 31). Clinicians fail to assess and relieve suffering, and may even withdraw from the child and family during the nal phase of a childs fatal illness, rather than face their own powerlessness and fear. By contrast, the pediatric palliative-care movement actively seeks to relieve suffering throughout the course of illness. Compassionate communication and relief of physical distress can be incorporated into the aggressive ght for survival, instead of limited to the last days or weeks when mortality is nally admitted. Parents lack of information is also a signicant barrier to palliative care for children. Too often, physicians spend limited time discussing diagnosis, prognosis, and options. In the urgency to treat, parents may not be told of the limitations of and suffering imposed by treatments. Informed consent forms do list every possible side effect, but that information is often too alarming or too technical for authorizing parents to comprehend intellectually and emotionally. These parents often simply sign where they are told in hopes of receiving the treatment benet the physician describes. Some do not have the literacy level to comprehend the complex information given. Frequently, parents are not brought in on decisions of the caregiving team, and they become outsiders in the care of their own children. Fear and anxiety complicate their ability to raise questions with professionals. Because parents often feel that they are not given adequate information, and because they frequently do not know what to expect or what questions to be asking, nurses must ask parents what information they want, and guide them to ask the questions they want answered. Do they want to talk about the symptoms, the treatment, the impending death, funeral plans, or bereavement issues? What do they need to know? Finally, many children and families have limited access to health care. Many are not insured through private or public health insurance. Even if they are covered, their insurance may limit reimbursement to physician and hospital care only, and may even include coinsurance and deductible payments that become increasingly burdensome for families. Multidisciplinary services such as social work, counseling, physical therapy, home nursing, and medical equipment are limited or absent in many insurance policies. Although a multidisciplinary team is essential to provide adequate palliative care for child and family, the U.S. health-care system is not organized to reimburse such services.

The belief that children should not die is a persistent barrier to preparing for the death of a child. Parents and professionals focus on survival at all costs.

Because of these barriers, the switch to hospice care generally does not take place until the very end of life. In fact, most children die before receiving it. Even when a child does enter hospice, the current hospice model of care itself presents many barriers (AAP, 2000). The federal Medicare model for chronically ill adults and those over 65 has been used as a blueprint for private insurance and Medicaid benets. This limits hospice admission to

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those people with a prognosis of 6 months or less to live. The course of childrens illness is particularly difcult to predict, and it is hard emotionally to proclaim that only 6 months remain. Likewise, many hospice programs limit costly life-prolonging therapies, such as transfusions and parenteral nutrition, which physicians and families may be unwilling to give up. Even if a child is referred to hospice, most hospice professionals need additional pediatric training to care for dying children. To compound issues even further, some state Medicaid programs do not pay for hospice at all. Childrens Hospice International, with assistance from the federal government, has established a Program for All-Inclusive Care for Children (PACC) as a model to provide care for all children with life-threatening conditions and their families (Armstrong-Dailey & Zarbock, 2001). Model programs offer integrated care that includes home, outpatient, respite for family caregivers, and inpatient acute care. The goal is to avoid fragmented care, relieve psychosocial and spiritual distress, ensure access to needed services, and avoid crisis-driven costly hospitalizations. Family support services include medicine, nursing, social work, chaplains, therapists, home-health aides, day care, family support, care for siblings, and community services to prevent unnecessary institutionalization of the child. Interdisciplinary coordination of services saves money. Moreover, the Pediatric Palliative Care Consulting Service of Childrens Hospital in Seattle, Washington, has developed an innovative program for children who are not expected to survive childhood (A New Language, 2002). The hospital has forged an agreement with private insurance and the states Department of Social and Health Services to provide care at home. Expert palliative services reduce the cost of repeated hospitalizations and emergency room trips. Palliative-care coordination is believed to be saving the state $3,000 a month for each child served. Working in close partnership with local hospices, the health-care team includes a care coordinator, insurance case manager, and health-care professionals working closely together to meet the goals of dying children and their families.

Managing Symptoms at the End of a Childs Life


For younger children, assessments by family members determine the degree of distress and are the roots of an effective plan of care. Parents must be consulted as experts on their childs comfort (IOM, 2003). Parents vary in the degree to which they recognize the extent of their childs suffering, but they report that physicians and nurses frequently do not notice or relieve many of the symptoms that they, as parents, recognize (Wolfe et al. 2000). Managing Pain Children at the end of life often suffer pain that is not recognized and not treated (Wolfe et al., 2000). Children respond to pain with growing fear and anxiety, and eventually withdrawal. Myths about children and pain contribute to (1) physicians not adequately prescribing pain medication, and

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Box 12-3
MYTH

MYTHS AND REALITIES ABOUT CHILDRENS PAIN


REALITY Even the youngest infants experience pain. Children will tell you they are in pain. Children may believe adults will know they are in pain and so they do not report it. They may not report pain because they are fearful of taking medicine or going to the hospital again. Preschool children as young as 3 or 4 years can use visual pain rating scales. There is no evidence that opioids used with care are unsafe for children. Addiction is dened as a compulsive craving for drugs to get high. There is no evidence that children taking opioids to relieve pain will turn into addicts.

Infants and children do not experience pain.

Children cannot tell you where they hurt. Opioids are dangerous in children. Children will become addicted to opioids.

Source: From Huff & Joshi (2001).

(2) nurses not questioning children about pain and giving even less medication than prescribed. See Box 12-3, Myths and Realities about Childrens Pain. A pain evaluation tool especially developed for nurses working with children is called QUESTT (Huff & Joshi, 2001). Q stands for Questioning the child or parent to get full description of the location, quality, intensity, and pattern of the pain. Verbal questioning may be ineffective if the child is preverbal, does not speak English, or is cognitively impaired. U stands for Using pain rating scales. The Oucher scale with six photographs of a childs face, depicting no hurt and biggest hurt, and the FACES scale with six cartoon faces, are the most common scales used from ages 3 to 13. See Box 12-4, The FACES Scale. E stands for Evaluating behavior and physiological clues. Documentation of behavioral changes reinforces the childs report on a pain rating scale. The childs normal behavior needs to be understood. Behavioral indicators of pain in children include irritability, restlessness, changes in sleep, changes in feeding patterns, head banging or rocking, changes in crying, including long periods

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Box 12-4

THE FACES SCALE

3
Mild

10

No Pain

Moderate

Severe

Worst

when the child cannot be comforted, immobility, and passivity. Of course these behaviors can indicate other distress besides pain, but they are clues that need to be looked at together. S stands for Securing parental involvement. Parents should be actively involved in recognizing signs and behaviors indicating pain. Some may already recognize these signs for their children and some may need coaching. T stands for Taking the cause of the pain into account. It is important to evaluate whether the pain is due to a scrape, a headache, or a metastatic lesion. T stands for Taking action. Nonpharmacological and pharmacological interventions for pain are discussed in Unit Six: Comforting.

Managing Pediatric Symptoms Unit Six details symptom management for all ages. However, comforting dying children is different from comforting adults in many ways. Most obvious, medication doses for children must be adjusted according to weight. Furthermore, medication administration to a resistant child or adolescent may require the expertise of an experienced pediatric nurse. The patient cannot be separated from the family, which should be in control and actively participate in all aspects of care. Comforting interventions may involve familiar blankets and stuffed toys, beloved music and videos, a homelike environment, and physical care that includes cuddling and bathing by family members. At the very end of life, turn off monitors and infusions and eliminate discomforting assessments like blood draws. If the child is at home, the family will need extensive guidance to control the signs of imminent dying and to witness distressing breath sounds without calling for emergency medical assistance. If at all possible, a nurse should be at their side during the last hours.

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Psychosocial Dimensions of Caring for Dying Children and Their Families


Children with life-threatening illness come to an understanding of death and their own death much earlier than healthy children. Although the children often have intuitive knowledge of their life ending, the adults around them often assume that they are too young to understand. Given adults hesitance, inability, or lack of awareness of the need to listen, children often become reluctant to talk (Faulkner, 2001). Talking to Parents Facing Childrens Death To offer humane care to the dying and their families is to take time to listen, to respect their wishes for what they want to know and do, to support them in their grief, and to share with them that the professional is also affected by the situation (Davies & Connaughty, 2002, p. 6). Physicians nd it difcult to inform parents that their childs condition is not improving. Once the physician has explained the terminal prognosis, the nursing role is to support the parents in understanding the implications. Parents commonly report that hospital staff members do not understand how to provide emotional support (Davies & Connaughty, 2002). Attentive listening to feelings is always the rst step. Often, after being heard, family members will say they feel better and more able to function. Following are Guidelines for Interactions with Families of children with Life-Threatening Illness (IOM, 2003): Listen carefully. Pay attention to questions. Reassure the family that intense reactions are normal. Remember the physical, mental, emotional, and behavioral aspects of grieving. Respect family need for hope. Get an early idea of what the family knows and how family members express themselves. Use everyday language instead of clinical language. Consider using drawings to explain diagnosis and prognosis. Seek guidance from families about amount and kind of information desired. Realize that the family needs time to process the information. Check understanding of what the family has heard. Provide written information to family if appropriate. Encourage family to write down questions. Offer to help family prepare to talk to the child. Respect family decisions to withhold information from the child, but inform them that this will block honest communication and isolate the child. Cultural or religious preferences may prohibit open communication about dying. Involve the family in developing and revising palliative goals. Consider the example of Martin McAllister, who worked for an agency providing pediatric home care. His conversation with one family followed the

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Guidelines for Interaction with Families. During his initial home visit to see 3-year-old Danny, who is dying of a rare malignancy, he spent the early part of the visit listening to the anger and sorrow the family was feeling. They kept apologizing for expressing their strong emotions, and he reassured them that these were normal grief reactions and acknowledged, This is a sad time for everyone. His primary goal was to explain Dannys condition and palliative care to Eileen and Clara, his mother and aunt who were the primary caregivers. But when he handed them written literature from the agency, they didnt glance at it. Initially they couldnt think of any questions to ask about Dannys care. That was when Martin sat down at the kitchen table with Eileen and Clara to draw some pictures illustrating the tumor in Dannys lungs and liver. Then he drew arrows targeting where each palliative drug prescribed would make Danny more comfortable. He explained, they nodded, and they nally asked a few questions. He urged the family to write down more questions for the next visit, when he told them they would develop some goals for Dannys care together. This pleased Eileen, who said she would ask her husband to be part of the visit.

To offer humane care to the dying and their families is to take time to listen, to respect their wishes for what they want to know and do, to support them in their grief, and to share with them that the professional is also affected by the situation (Davies & Connaughty, 2002, p. 6).

Talking to Children Facing Their Own Death Parents usually decide when and how much to tell their children. Palliative psychosocial interventions foster communication between parents and their children. The childs questions guide the conversation, and art, music, play, and stories facilitate expression. Even when parents decide to protect the child from the news, children are often aware that they will not live to grow up. Over time, they pick up emotional cues from the adults who are trying to hide their feelings. For example, when one 5-year-old boy was asked what he was going to be when he grew up, he answered, a ghost (IOM, 2003). There is growing agreement that dying children should be informed in language appropriate to their developmental level and their wishes. However, you should respect contrary family and cultural values. Following are guidelines for nurses conversations with terminally ill children when the parents decide to be open in communication: Listen to the childs questions Beware giving too much or too little information Remember that some children seek to protect their parents and other adults from distressing conversation Offer to talk but accept the childs silence or change of subject Use dolls, stuffed animals, and puppets to aid childrens expression With parental permission, involve the child in identifying goals and making decisions about care.

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The Life of Dying Children and Their Families Children should continue familiar activities as long as they can. They should learn, spend time with other children, be expected to act responsibly, and be disciplined when they do not (Gibbons, 2001). If they are infants, they need visual and auditory stimulation, toys to manipulate, and to be touched and held. If they are toddlers or preschoolers, they need to play, draw and use other arts to express feeling, have consistent limits, and be held and comforted. Preschoolers need to understand that the illness and treatments are not punishment. They need to express their fears. Storytelling and books may help. School-aged children need to play, to go to school, to have contact with friends, and to express their fears. Adolescents are seeking greater independence while the illness is making them more dependent. It is essential that they keep in contact with friends and go to school as long as possible. School provides normal structure in their lives and connections with peers. Older teens need to challenge authority and question parental values at the very time that curative treatment requires them to comply with authority. It is essential to understand and respect their needs for autonomy and control. If they are actively part of decision-making, they will feel more secure and be less resistant. Younger teens may feel immortal, but older teens can see clearly that they may not live to adulthood. An adolescents future orientation makes acceptance of death particularly difcult. Their strong will to live often coexists with an awareness that death is likely (Gibbons, 2001).

Children should continue familiar activities as long as they can. They should learn, spend time with other children, be expected to act responsibly, and be disciplined when they do not (Gibbons, 2001).

The everyday life of a terminally ill child presents many practical challenges for the family. See Box 12-5, Challenges to Family Life When a Child is Dying. The family needs the assistance of the multidisciplinary team in order to plan for health care at home and to normalize the childs life by continuing schooling and play activities, and welcoming the childs friends. The needs of siblings must not be forgotten. Caregiving responsibilities will challenge parental nances and employment. Finally, plans must be made for emergent symptoms and management of impending death. Everyone in the household will live in unrelenting uncertainty until the child dies. Mothers, Fathers, and Siblings of Dying Children Mothers are usually the primary caregivers for their children and provide most physical care when the child is at home. Caregiver burdens are discussed in Chapter 11. Mothers often give their jobs up to provide needed care. Fathers tend to function as wage earners, caregivers of siblings, advocates in the health-care system, and problem-solvers when there is trouble with medical technology (Lehna, 2001). Siblings should be informed and

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Box 12-5

CHALLENGES TO FAMILY LIFE WHEN A CHILD IS DYING

Adapting space in the home to the childs comfort and safety Arranging personal care and medical care into life at home and school Planning with school Providing for play and friends Maintaining employment and nances Caring for the household and the child Responding to needs of siblings Planning for emergencies Deciding how to respond to symptoms Planning for impending death Planning for after death
Source: Institute of Medicine (2003).

involved in caring for the sick child, as well as in keeping the household functioning. However, these responsibilities must be balanced with their needs to continue in school and participate in normal activities for their age. It is not surprising if they struggle with feelings of resentment and anger as all the family energy is focused on their dying sibling. Every effort should be made not to forget their individual needs.

Parents Grieving a Childs Death


Abraham Lincoln said, You have not known grief until you have stood at the grave of your child (Kane & Primomo, 2001, p. 162). Grief and mourning of parents who have lost a child possess some unique qualities beyond those discussed in Chapter 7 on grief. In particular, guilt is a frequent, unfortunate emotion in bereaved parents (Worden & Monahan, 2001). Guilt may arise over worry whether they made the right decisions in the childs care. They may feel responsible for the death and think that they made a mistake that caused it. It is not uncommon for surviving parents to feel guilt that they are alive while the child they were supposed to protect is dead. After the death of a child, marriages are under greater stress. Parents may misunderstand and feel hurt by each others grieving styles. One parent may be openly expressive, which threatens the other, who withholds emotions (Worden & Monahan, 2001). The expressive parent may conclude that the avoiding parent didnt care about the child. When neither parent is talking about the death, their surviving children are left with no way to mourn openly. Parents who do best are those who have found some meaning in the childs death, have ongoing support, and were able to give the dying child information and support. The family members are able to re-engage in life

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with less distressing persistent symptoms of grief. The death of a child tends to be a life-long sadness for surviving parents. Signicant life events like birthdays, weddings, holidays, and graduations continue to be a reminder that the child is not present.

Parents who do best are those who have found some meaning in the childs death, have ongoing support, and were able to give the dying child information and support.

Planting the Seeds The most powerful nursing intervention to help parents grieving over a child is active listening. Ask them to tell you about their child. Pay attention. Use reection and summary. Urge them to reach out to their support network. Grief should not be borne alone.

CONCEPTS

IN

ACTION

Marty Chavez is 5 years old. She was diagnosed shortly after birth with a rare neurological disorder, which has caused her to be developmentally delayed. The family was told that Marty was unlikely to live beyond young childhood. She does not talk, seldom sleeps through the night, wears diapers, and cannot feed herself. Martys mother had to quit her job to provide full-time care for her. Marty is able to smile and laugh in interactions with her parents and two healthy older siblings. The family is of modest means. Martys father is a supervisor at the local post ofce. Shortly after her fth birthday, Marty takes a turn for the worse. She stops swallowing so that a PEG tube has to be inserted. More distressing is that Martys happy personality deteriorates. She cries day and night. Muscle spasms erupt in her arms and legs. She kicks and hits whenever she is touched. The doctor recommends that she not be resuscitated if her heart stops. Martys mother begins having frequent headaches and becomes forgetful. Her 11-year-old brother starts getting into ghts at school. Her 14-year-old sisters grades start falling. Her father starts sleeping at a friends house because he cannot rest with Martys frequent screams. What are the familys needs? Consider all members. What are Martys nursing needs? What kinds of services are needed if true palliative care is to be provided for this family? How would the situation be different and the nursing interventions changed if Marty were an adolescent? If she were 75 years old?

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References
A New Language of Hope. (2002). State Initiatives in End-of-Life Care, 15, 58. American Academy of Pediatrics. (2000). Palliative care for children. Pediatrics, 106(2), 351356. Armstrong-Dailey, A., & Zarbock, S. (Eds) (2001). Hospice care for children. New York: Oxford University Press. Brown, C. (2001). Therapeutic play and creative arts: Helping children cope with illness, death, and grief. In A. Armstrong-Dailey and S. Zarbock, (Eds.), Hospice care for children (pp. 251289). New York: Oxford University Press. Brown, L., & Brown, M. (1996). When dinosaurs die: A guide to understanding death. Boston: Little, Brown & Co. Buscaglia, L. (1982). The fall of Freddie the leaf. Thorofare, NJ: Charles B. Slack. Christ, G. H. (2000). Healing childrens grief: Surviving a parents death from cancer. New York: Oxford University Press. Davies, B., & Connaughty, S. (2002). Pediatric end of life care: Lessons learned from parents. Journal of Nursing Administration, 32(1), 56. Doka, K. (Ed.). (2000). Living with grief: Children, adolescents, and loss. Philadelphia: Taylor and Francis. Faulkner, K. (2001). Childrens understanding of death. In A. ArmstrongDailey & S. Zarbock (Eds.), Hospice care for children. New York: Oxford University Press. Feeg, V. D., Miller-Thiel, J., & Will, J. (2001). Caring for children with life limiting illness and their families: Focus on pediatric hospice nursing. In A. Armstrong-Dailey & S. Zarbock (Eds.), Hospice care for children (pp. 6899). New York: Oxford University Press. Gibbons, M. B. (2001). Psychosocial aspects of serious illness in

childhood and adolescence: Curse or challenge? In A. Armstrong & S. Zarbock (Eds.), Hospice care for children (pp. 4967). New York: Oxford University Press. Huff, S., & Joshi, P. (2001). Pain and symptom management. In A. Armstrong-Dailey & S. Zarbock (Eds.), Hospice care for children (pp. 2348). New York: Oxford University Press. Institute of Medicine. (2003). When children die: Improving palliative and end-oflife care for children and their families. Washington, DC: National Academies Press. Kane, J., & Primomo, M. (2001). Alleviating the suffering of seriously ill children. American Journal of Hospice and Palliative Care, 18(3), 161169. Kastenbaum, R. (2000). The psychology of death. New York: Springer. Lehna, C. (2001). Fathers and siblings roles in families with children in home hospice care. Journal of Hospice and Palliative Nursing, 3(1), 1723. Oltjenbruns, K. (2001). Developmental context of childhood: Grief and regrief phenomenon. In M. Stroebe, R. Hansson, W. Stroebe, & H. Schut (Eds.), Handbook of bereavement research (pp. 169197). Washington, DC: American Psychological Association. Webb, N. B. (2000). Play therapy to help bereaved children. In K. Doka (Ed.), Living with grief: Children, adolescents, and loss. Philadelphia: Taylor and Francis. Wolfe, J., Grief, H., Klar, N., Levin, S., Ellenbogen, J., Salem-Schatz, S. et al. (2000). Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine, 342(5), 326333. Worden, J., & Monahan, J. (2001). Caring for bereaved parents. In A. Armstrong-Dailey & S. Zarbock (Eds.), Hospice care for children (pp. 137171). New York: Oxford University Press.

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C H A P T E R

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Philosophical Reections From all the rest I single out you, having a message for you, You are to dielet others tell you what they please, I cannot prevaricate, I am exact and merciless, but I love you. There is no escape for you.
WALT WHITMAN, AMERICAN POET WHO NURSED DURING THE CIVIL WAR (TO ONE SHORTLY TO DIE, IN READINGS FROM THE PRESIDENTS COUNCIL ON BIOETHICS, 2003)

Learning Objectives 1. Discuss the tendency toward medical avoidance of end-of-life prognoses. 2. Identify physician and nurse roles in telling the truth about prognoses. 3. Explain generic signs of imminent death and those specic to the most common terminal disease processes. 4. Explain the predictable effects of a nal common pathway involving end-stage organ failure. 5. Apply knowledge of disease course to the end-of-life nursing practice of anticipatory guidance.

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This chapter begins Unit Six, which develops the readers competence in physical comforting. In the End-of-Life Caregiving Model, the leaves represent comforting strategies to alleviate different kinds of physical distress. In order to comfort physically at the end of life, nurses need to be able to anticipate the course of illness. This chapter begins the unit by addressing the challenges of predicting the future course of disease and telling the truth about prognoses. The chapter also discusses anticipating the nal course for the most common causes of mortality, the nal common pathway of dying, and the nurses end-of-life role in anticipatory guidance.

PROGNOSTICATION AND TRUTH-TELLING


In contrast to the words of Walt Whitman at the beginning of this chapter, professional norms in medicine lead physicians to avoid predictions and not to volunteer information unless questioned (Christakis, 1999).

Predicting the Future


Beginning in medical school, physicians learn not to talk about emotionridden matters. Doctors tend to believe that their predictions affect outcomes, so they are deliberately ambiguous or optimistic. They worry about destroying hope and creating self-fullling prophecies. Maintaining a positive attitude is strongly valued in contemporary America. With patients living with chronic illness and cancer, physicians tend to present the bright side and to use statistical generalizations rather than discussing individual fate. Grounded in an ethic of benecent silence, physicians tend to believe that optimism makes patients easier to manage and more trusting. In American oncology practice, hope is primarily conveyed by physicians commitment to provide patients with diagnostic and therapeutic information and to employ a dazzling array of high-tech therapies (Christakis, 1999, p. 131). They choose euphemisms like deposits instead of more cancer and interesting therapies instead of toxic therapies. When physicians do prognosticate, they tend to minimize burdens of treatment and overestimate survival times (Christakis, 1999). Yet, the downside of too much optimism near the end of life may mean patients never see the end coming, never prepare for it, and ght vainly against it (Christakis, p. 178). Basta (2000) describes a fate worse than death when practitioners use invasive technology to treat people to death, even after they have lost all cognitive functions. Sustaining a life in a body that is irreversibly incapacitated and without a mind is no longer a miracle of medicine but a routine in American intensive care units (Basta, 2000, p. 45). Too often, the focus is on maintaining physiological function when reason and experience indicate that it is impossible for medical intervention to achieve the desired physiological response. Failing to look honestly into the future, death catches physician, patient, and family unawares.

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To better understand this failure in prognostication, it is important to also appreciate the contemporary medical preoccupation with aggressive life-saving measures. Physicians are socialized to battle disease and death; they have been taught to ght death down to the nish line. This war against death often requires emotional detachment from the patient who is suffering; the war may even require inicting more suffering. Nurses are caught in the middle of this battle, frequently seeing that the battle has been lost, but still expected to maintain all the technologies of battle. And because the modern inclination is to ght death to the very end, truth sometimes gets lost in the battle.

Telling the Truth


Telling the truth is known as veracity and is a fundamental principle guiding health-care ethics. Truth often is concealed, however, when the practitioner fears that disclosure might cause harm or when the patient or family does not want to hear the truth. The Hippocratic Oath directs physicians to avoid saying anything that will upset the patient (Veatch, 2003). Although contemporary attitudes favor truth-telling, many physicians choose to disclose only partial truths to avoid the patients distress. In addition, many cultural groups prohibit direct discussion of serious illness and a terminal prognosis with the patient. See Chapter 8, Cross-Cultural Competency at the End of Life. Physicians have the responsibility for initially breaking the news that patients have a limited time left to live. They traditionally are considered to have the diagnostic and prognostic expertise to determine and disclose this information. This is a heavy burden for them, and frequently they do poorly in disclosing this information to patients. Lamont and Christakis (2003) propose the following protocol for providers delivering an end-oflife prognosis: Preparation involves research to clarify likely survival, alerting the patient ahead of time, arranging a private meeting, establishing what the patient feels and understands, and determining what the patient wants to know. Content involves telling the patient you have bad news, stating that simply, making optimistic statements that are true, and estimating survival based on published information about similar patients. For example, I have bad news to share. The cancer has spread to your liver and bones, which means we cant cure it. But we can control the pain and any other symptoms. Patients in your situation live on the average 3 to 6 months. Acknowledging the patients response by expressing empathy and assuring the patient that the physician will stay involved in care. Closing by summarizing the information, arranging for follow-up, and offering to discuss the news with anyone important to the patient.

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Often nurses working collaboratively on an interdisciplinary team can facilitate the initial and ongoing process of disclosure. We encourage patients to ask their questions. We encourage physicians to stop and sit down and answer those questions. Nursing patients who are facing death requires an ability to speak honestly with them. Three communication approaches are essential to speaking truth at the end of life. Each is identied with an example: 1. Asking difcult questions: What did the doctor actually say about your condition? Did he give you a prognosis? 2. Speaking the truth about losing functions: You just cant expect yourself to keep up all the housekeeping and cooking. You need rest. Your anemia is getting worse. 3. Facing avoidance: I know you want to try to build up your strength. But right now it is unsafe for you to go to the gym. Lets focus on what you can do despite the dizziness. Because physicians emphasize the possibilities for each new intervention and try to project optimistic medicalized futures, patients and families often become extraordinarily preoccupied with maintaining medical regimens. As nurses, we never use a sledgehammer to impose reality, but remain committed to telling the truth when invited (Zerwekh, 1994, p. 33). Chapter 6 further explores the nurses role in truth-telling.

We never use a sledgehammer to impose reality, but remain committed to telling the truth when invited.

Prognostication is not an exact science, which makes truth-telling even more complex. The next section provides some insight into how to anticipate the nal course of dying.

ANTICIPATING THE FINAL COURSE


To understand and be able to anticipate the hallmark events at the end of life, it is important to understand that some circumstances are predictable for all dying patients, and some are unique to specic disease processes.

General Guidelines
A terminal prognosis is more likely in patients whose disease is progressing clinically, who keep being hospitalized or seen in the emergency department, and who exhibit a striking functional decline. The Karnofsky Performance Status Scale is frequently used to rate functional decline; scores of 50% or below often indicate that the end of life is approaching (see Box 13-1). Reduction in nutritional status due to the terminal disease is also predictive of mortality.

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Box 13-1
100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0

KARNOFSKY PERFORMANCE STATUS SCALE

Normal activity, no evidence of disease Normal activity, minor symptoms of disease Normal activity with effort, some disease symptoms Unable to perform normal activity or any active work, cares for self Needs occasional assistance with self care, but mostly independent Requires major assistance for self care, frequent medical care required Disabled and requiring signicant assistance Severely disabled and needing active medical support Very sick, intensive medical support required Imminently terminal, rapid progress of fatal symptoms Deceased

Source: Adapted from National Hospice Organization (1996).

In general, this comprises unintentional weight loss of more than 10% over the last 6 months and a serum albumin under 2.5 gm/dL. Patients are considered to have weeks to months to live when they are still alert, with declining disease course, growing weakness with functional impairment, and impaired nutritional status (American Academy of Hospice and Palliative Medicine, 2003). They often have days to weeks as their cognitive status becomes variable, confusion and/or restlessness is increasing, their disease course is advanced, and they are nearly bed bound. They may have hours to days when their consciousness is decreased or uctuating, the clinical decline is rapid, oral intake and urine output are reduced, and they are unable to turn over in bed. They are within hours or minutes of death when there are periods of apnea, secretions are rattling in their throat, and the extremities are cold or mottled.

Internet Reference Box See www.victoriahospice.com for explanation of the Palliative Performance Scale, developed by the Victoria Hospice. It incorporates a rating of ambulation, activity, evidence of disease, self care ability, nutritional intake, and consciousness to predict the end-of-life course effectively.
WWW.

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National Vital Statistics


Competent care at the end of life requires that nurses understand the nal disease pathway for the most common causes of death. The top 10 causes of death for people of all ages in the United States are as follows: 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. Heart disease Cancer Cerebrovascular disease Chronic lung disease Unintentional injuries Diabetes Pneumonia and inuenza Alzheimers disease Kidney disease Septicemia

For those aged 20 to 54, HIV disease moves to the top 10. From age 25 to age 64, chronic liver disease is a top killer (Anderson & Smith, 2005). In order of frequency, this section discusses the predictable terminal course of each of the following causes of death: heart, cancer, cerebrovascular disease, chronic lung disease including pneumonia, diabetes, Alzheimers disease, kidney disease, liver disease, and HIV. Prognostic information in the following diseases is adapted from the National Hospice Organization (1996) guidelines and reported by the American Academy of Hospice and Palliative Medicine (2003). Failure of the Heart Some people with advanced coronary disease die quickly and without warning from arrhythmias. However, many live for prolonged periods of time with heart failure managed by medical and surgical interventions. It is therefore difcult to predict the end of life. The patient who is dying of advanced heart failure no longer responds to drug therapy, is not a candidate for further invasive procedures, and presents with signicant symptoms due to the underlying pathophysiology. The heart may fail due to many conditions, including myocardial infarction, coronary artery insufciency, cardiomyopathies, myocarditis, diseases of the heart valves, congenital defects, pericarditis, systemic hypertension, and pulmonary hypertension (Porth, 2005). Manifestations of heart failure are due to reduced cardiac pumping ability, reduced blood ow to the kidneys, and activation of the sympathetic nervous system (elevated norepinephrine and epinephrine). In decompensated heart failure, stroke volume is reduced and the heart is working against great resistance in the constricted blood vessels. Vasoconstriction occurs due to the effects of sympathetic nervous activation and action of angiotensin II, which is activated by reduced renal circulation. Fluid is retained by the kidneys due to angiotensin II, which promotes aldosterone and ADH (antidiuretic hormone) production. Salt and water retention causes peripheral and pulmonary edema.

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The ventricles become overstretched with excessive uid volume (preload) because of increased venous return and diminished ventricular pumping ability. Treatment of advanced congestive heart failure involves reducing the high lling pressures with diuretics, angiotensin inhibitors like lisinopril, and beta-blockers like metoprolol to reduce vasoconstriction (Nohria, Lewis, and Stevenson, 2002). In the terminal phase, symptoms can no longer be controlled and/or patients may not tolerate the side effects of these drugs (Goodlin, 2003). Prognosis worsens when the patient develops symptoms consistent with New York Heart Association Class IV in which patients cannot carry on any physical activity without discomfort (Porth, 2005). Symptoms may be present even at rest and include: Dyspnea at rest and on exertion Orthopnea and paroxysmal nocturnal dyspnea Angina Weakness, syncope, and exhaustion

Physical examination reveals inspiratory crackles, gallop rhythm, pitting edema in extremities, and distended neck veins. An ejection fraction of less than 20% predicts mortality. Decreased survival time can also be predicted by the presence of supraventricular and ventricular arrhythmias resistant to treatment, history of cardiac arrest, presence of HIV, history of syncope, and an embolic stroke of cardiac origin. The patient is considered terminal if he is not a candidate for invasive interventions or if these interventions have failed. Interventions include angioplasty, cardiac bypass (CABG), left ventricular assist devices, pacemaker, or debrillator implant. With increasing frequency, patients dying of cardiac failure are being instrumentized and admitted to hospices with implanted debrillators and ventricular assist devices. Cancer Normal cells are transformed into cancer cells through a process termed oncogenesis. The process involves inheritance of susceptible genes, immunological defects, and exposure to environmental agents such as viruses, radiation, and carcinogenic chemicals. Traditional cancer treatment involves surgical removal if the tumor is localized with dened margins, and radiation or chemotherapy, which target rapidly growing cells. Unfortunately, patients often arrive at the end of life with severe side effects of these treatments. Palliative care may include relief of radiation burns or other radiation-caused tissue damage. Likewise, patients may need relief of chemotherapy complications, such as stomatitis or bone marrow depression. Recent treatment includes biologic response modiers, such as interferon and interleukin in selected cancers. Patients receiving these drugs near the end of their life may be suffering signicant side effects. Commonly used in end-stage cancer treatment today are hematopoietic growth factors that increase the production of

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red blood cells (erythropoietin synthesized as Epogen or Procrit) and white blood cells (granulocyte colony stimulating factor synthesized as lgrastim or Neupogen). Continuing use of these extremely expensive drugs at the end of life can be a great cost burden on hospice. Both radiation and chemotherapy are used palliatively for cancer patients at the end of life. Radiation controls pain and other symptoms at a specic site of tumor involvement. Chemotherapy can be selected for control of symptoms without the goal of prolonging survival. For instance, chemotherapy can reduce chest wall pain in breast cancer, chest pain in lung cancer, bone pain in prostate cancer, and pain from adenopathy in lymphoma (Prommer, 2004). However, chemotherapy-related toxicities can have a negative impact on quality of life and those burdens must be subdued. Many terminal symptoms in dying cancer patients can be predicted based on the location of metastatic lesions. Pain is common due to the pressure from tumors on surrounding tissue, causing ischemia and nerve compression. Lymphatic spread causes pain and inammation; enlarged lymph nodes can press on surrounding tissues as well as obstruct the gastrointestinal or urinary tracts. If the bone is involved, chemical mediators such as prostaglandins and bradykinins are released to cause pain. Bone breakdown places the patient at risk for pathological fracture and hypercalcemia. If the bone marrow is involved, there will be fatigue from low red blood cell production, bleeding from reduced platelet production, and infections from reduced white blood cells. Liver metastases cause hepatic failure and biliary obstruction causes jaundice. Brain metastases increase intracranial pressure and place the patient at risk for seizures. Thought processes deteriorate as masses of the brain enlarge. Metastases to the lungs impair airway clearance and cause multiple breathing problems. The patient with extensive metastatic disease is close to death when therapies are not slowing disease progression and their Karnofsky Peformance Scale is less than 50%. The following sections briey discuss the predictable course of the most common malignancies in the order of their likelihood of causing death: lung, colorectal, breast, prostate, pancreas, and non-Hodgkins lymphoma. LUNG Lung cancer is the most common cause of cancer death in men and women. Eighty percent are nonsmall cell (adenocarcinoma, squamous cell, large cell) and 20% are small cell (oat cell), which is more aggressive (Krebs & Russell, 2001). Regional tumor spread includes the other lung, pleural cavity, pericardium, tracheal or esophageal obstruction, laryngeal or phrenic nerve involvement, or superior vena cava compression, which blocks blood return from the upper half of the body. Pancoasts tumor extends to the chest wall and causes shoulder pain radiating down the ulnar nerve distribution. The malignant cells can secrete hormones, including those that mimic the action of antidiuretic hormone (syndrome of inappropriate antidiuretic hormone or SIADH) to cause uid retention and dilute serum sodium. Metastases occur early in the disease process and are common in the lymph nodes, brain, liver,

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bone, and adrenals of the patient with advanced disease (Kreb & Russell, 2001). Aggressive radiation and chemotherapies are often used late in the disease in an effort to secure periods of remission. Therefore, end-of-life care often involves management of radiation and chemotherapy complications and questions over the continuing use of hematopoietic growth factors. COLORECTAL Cancer of the bowel is the second leading cause of cancer death. The cancer spreads into layers of the bowel and invades surrounding structures. One quarter of patients already have metastases to the liver when they are diagnosed. Chemotherapeutic agents may be infused directly into the liver. Metastatic sites in order of frequency include the lymph nodes, liver, lung, brain, bone, and adrenal glands (Heidrich, 2002). Extension of colorectal tumors is likely to cause obstruction of the bowel, ureter, or urethra. Surgery is used to resect or bypass obstructing lesions. Chemotherapy has minimal effect on metastatic colorectal malignancies. BREAST Breast cancer is the third cause of cancer death. Metastatic sites in order of frequency include the axillary lymph nodes, bone, lung, liver, pleura, and adrenals (Heidrich, 2002). Common complications of advanced breast cancer include malignant pleural effusions, compression of the spinal cord from tumor, and hypercalcemia caused by several factors including bony metastases. High dose chemotherapy is used to secure remissions, but may cause severe bone marrow depression. Endocrine therapies are indicated for patients whose breast cancer cells are positive for estrogen or progesterone receptors. PROSTATE Cancer of the prostate is fourth in causes of cancer death. It is the most frequently diagnosed malignancy in men. It is often diagnosed when it has spread into the pelvis, causing urinary obstruction. It frequently metastasizes to the bone, lungs, and liver. Advanced disease is treated by hormonal manipulation to stop the growth of androgen-dependent cells or by removal of the testes, which are the source of most androgens (Heidrich, 2002). Chemotherapy is tried for disease that does not respond to hormonal therapy. PANCREAS Pancreatic cancer is the fth leading cause of cancer death; the prognosis is usually grave at diagnosis. It metastasizes regionally throughout the abdomen, causes jaundice due to biliary obstruction, and also travels to the lungs, bones, and brain. Palliative surgeries are used to bypass obstructions of the bile ducts or bowel. Those with metastatic disease survive from 3 to 6 months. Pancreatic cancer cells are quite resistant to chemotherapy, which can only briey prolong life. Radiation may control local disease.

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NON-HODGKINS LYMPHOMA Non-Hodgkins lymphoma is the sixth leading cause of death from malignancies (Heidrich, 2002). Most commonly it presents with painless enlargement of nodes (adenopathy) in the cervical chain or supraclavicular region. Advanced disease involves lymphatic spread to organs in the chest and abdomen. Masses of the lymph nodes can cause pressure and obstruction wherever they are located. The disease metastasizes to the brain, bone, gastrointestinal tract, and bone marrow. Aggressive chemotherapy and interferon may still be considered palliative close to the end of life. Cerebrovascular Disease Most (70% to 80%) of strokes are caused by interrupted blood ow in a cerebral blood vessel, which causes ischemia. The less common and frequently fatal cause is hemorrhage of a cerebral vessel, the accumulating blood causes pressure on brain tissues. Immediately after a hemorrhagic or ischemic stroke, coma persisting past the rst three days is a strong indicator of mortality. Likewise, the following predict death if they exist on the third day: age over 70, elevated serum creatinine, absent response to voice or pain, and an abnormal brainstem response. Once the disease has become chronic, poor survival is predicted based on older age; dementia; inability to toilet, dress, or bathe without assistance; poor nutrition; and the development of infections.

Chronic Lung Disease Like heart disease, prognostication for those with chronic lung disease is extremely difcult. As a matter of fact, a recent study revealed that 83% of physicians did not discuss end-of-life plans with their patients (Newsbrief, 2004). This occurred despite the fact that 50% to 60% of COPD patients die within 5 years of diagnosis. The terminal stage is marked by increasing visits to the emergency department and hospitalizations for infections and failing respiratory function. Respiratory failure occurs when the lungs cannot oxygenate the blood (hypoxemia) and cannot eliminate elevated levels of carbon dioxide (hypercapnia). Carbon dioxide levels climb to a PCO2 of 50 mm Hg or greater and, despite supplemental oxygen, the PCO2 drops to or equals 55 mm Hg or lower with an oxygen saturation equal to or less than 88%. Hypoxemia causes deteriorating mental status and cyanosis; pulse and blood pressure are initially increased and then diminish as death nears. Hypercapnia has a sedative effect (carbon dioxide narcosis) and increases respirations and air hunger. In addition, deterioration of respiratory function leads to the following symptoms: Dyspnea at rest or with minimal exertion Cough Profound fatigue and weakness Inability to speak in full sentences

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Physical examination reveals wet breath sounds, reduced level of consciousness, increasing confusion, resting tachycardia, and weight loss. The signs and symptoms of heart failure (cor pulmonale) develop. Diabetes Mellitus Mortality related to diabetes is due to end-stage renal disease, cardiovascular disease, and cerebrovascular disease. Diabetes is the leading cause of endstage renal disease (Porth, 2005). Diabetics are at increased risk of these mortal conditions due to the impact of metabolic defects on selected body tissues, particularly the blood vessels. Dementia Patients with advanced progressive dementia due to Alzheimers or multiple infarcts can live a long time until they nally develop complications that take their lives. They are considered close to death when they are functionally incapacitated and complicating conditions develop. Functional incapacity includes: Unable to ambulate, dress, or bathe without help Incontinent of urine and feces Unable to communicate meaningfully Complications that predict likelihood of death drawing near include aspiration pneumonia, pyelonephritis, septicemia, multiple stage 34 pressure ulcers, recurrent fever despite antibiotics, and inability to maintain adequate nutritional intake with weight loss greater than 10% in 6 months and serum albumin less than 2.5 gm/dL. Special issues at the end of life are the patients inability to make decisions for a period of years before death, loss of the capacity to chew and swallow food, and infection (Pahnke & Volicer, 2002). Kidney Failure End-stage renal disease is caused by a variety of chronic diseases including hypertension, diabetes, glomerulonephritis, and polycystic kidney disease (Porth, 2005). At the end of life, other advanced disease processes may also cause the kidneys to fail. Any condition that causes reduced circulation to kidneys can cause them to fail; heart failure and liver failure may cause kidney failure. The natural reduction of oral uid intake in people close to death will eventually cause kidney failure. Likewise, invasion or obstruction of the urinary system by tumors will cause kidney failure. A patient whose death is due to renal failure will be a person who is not a candidate for kidney transplant or dialysis, or whose complications or choice require discontinuing dialysis. The lives of dialysis patients are one third as long as patients without end-stage renal disease (End-Stage Renal Disease Workgroup, 2002). Nevertheless, there is a culture of denial within

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dialysis units that disregards the need for advance care planning and fails to address the palliative needs of patients and families. Many dialysis units actually prohibit the honoring of Do Not Resuscitate (DNR) directives (EndStage Renal Disease Workgroup, 2002).

Internet Resource Box For more details regarding end-of-life challenges for those enduring dialysis, examine the Web site for promoting excellence in end-stage renal failure: www.promoting excellence.org/esrd.
WWW.

Laboratory values associated with end-stage renal failure include a serum creatinine greater than 8.0 mg/dL and a creatinine clearance of less than 10 cc/min. Accumulation of nitrogenous wastes cause the symptoms of uremia, which include nausea and vomiting; neuropathy (muscle weakness, paresthesias, and paralysis); neuromuscular irritability (muscle twitching, tremulousness, and seizures); and uremic encephalopathy (reduced level of consciousness, delirium, and coma). Metabolic wastes accumulate in the skin to cause pruritus and uremic frost. The kidneys fail in their production of erythropoietin, causing anemia. Uremia contributes to platelet dysfunction, causing bleeding disorders. The patient becomes acidotic as hydrogen ions are not excreted. Potassium is not excreted, with resulting hyperkalemia. Because the kidneys are unable to eliminate uids, edema and congestive heart failure result. The patient becomes hypertensive. Therefore, selected signs of terminal renal failure include: Oliguria with 24-hour urine output less than 400 cc Serum potassium over 7.0 Fluid overload Confusion and diminishing level of consciousness Nausea and vomiting Pruritus Restlessness Uremic pericarditis Pain secondary to neuropathies

Liver Disease The liver may fail due to advanced cirrhosis, usually caused by alcoholism or hepatitis. Functional liver tissue has been replaced by brotic tissue that is a result of chronic injury, inammation, and repair (Iredale, 2003). Advanced cirrhosis caused by hepatitis can be treated by eliminating the virus using interferon, ribavirin, and lamivudine. Future treatments will seek to reverse the brotic process. Those who eventually need a liver transplant have a 75% 5-year survival rate. The terminal patient is a person who is not a candidate

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for liver transplant or whose transplant has failed. Liver failure causes many problems including encephalopathy, ascites, and bleeding. Because the liver has lost its detoxifying capacity, neurotoxins accumulate to cause hepatic encephalopathy, which is manifested as progressive cognitive impairment leading to coma (Porth, 2005). Ammonia is one of those toxins; it is produced by bacterial degradation of proteins in the intestine. To improve mental status at the end of life, antibiotics may be given to reduce bowel bacteria, or lactulose may be administered to produce loose stools and a low bowel pH that inhibits ammonia production. Venous circulation to the liver is blocked by bands of brous tissue so that blood backs up to cause portal hypertension (Porth, 2005). Major complications include ascites and the development of collateral channels to go around the obstructed liver and connect the portal vein with systemic circulation. In ascites, uid builds up in the peritoneal cavity due to increased capillary pressure from portal hypertension, retention of salt and water by the kidney, and reduced colloidal osmotic pressure since the liver is failing to synthesize albumin, which normally maintains colloidal osmotic pressure. Massive uid build-up is a challenge at the end of life. When diuretics fail, should the patient be subjected to repeated paracenteses? Those with a prognosis of several months are offered peritoneovenous shunts (Denver or LaVeen), which drain peritoneal uid into the central venous circulation. The most important clinical consequence of collateral venous channels is the development of esophageal varices. These develop in about 65% of patients with advanced cirrhosis (Porth, 2005). The liver fails to synthesize many clotting factors including prothrombin and brinogen, which renders the patient at risk for bleeding, particularly from those esophageal varices. Variceal bleeding causes death in half of the patients with varices. Indicators of terminal condition include a serum albumin under 2.5 gm/dL and increased clotting time measured by a prothrombin time prolonged more than 5 seconds over control or an international normalized ratio (INR) greater than 1.5. The patient will have one or more of the following effects of hepatic failure that is unresponsive to treatment: Ascites Recurrent bleeding of esophageal varices Failure of the kidneys (hepatorenal syndrome) Bacterial peritonitis Hepatic encephalopathy

The prognosis is worsened in the face of progressive malnutrition, muscle wasting, active alcoholism, hepatic carcinoma, and hepatitis B. Human Immunodeciency Virus (HIV) The human immunodeciency retrovirus causes acquired immunodeciency syndrome (AIDS), in which immunity is profoundly reduced through destruction of CD4 T lymphocytes and macrophages. The CD4 recognize

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infected cells and foreign antibodies, activate antibody-producing lymphocytes, and orchestrate cell-mediated immunity in which infected cells and foreign antigens are destroyed (Porth, 2005). When viral loads climb and CD4 counts drop, the immune system cannot resist the development of opportunistic infections and malignancies. HIV has become a chronic disease as antiretroviral drugs and drugs controlling opportunistic infections have successfully prolonged life. A viral load of more than 100,000 copies and a CD4 count below 25 cells/mcL may predict a terminal condition if a patient is declining in function, choosing to forgo medication, antiretrovirals are no longer effective, or life-threatening complications have developed. Infections that do not respond to therapy are predictive of a poor prognosis. They include cryptosporidiosis, toxoplasmosis, mycobacterium avium complex bacteremia, progressive multifocal leukoencephalopathy caused by the JC virus, and toxoplasmosis. Life-threatening malignancies to which AIDS patients are most vulnerable include lymphoma of the central nervous system, systemic lymphoma, and visceral Kaposis sarcoma. The terminal phase can be predicted by wasting that does not respond to treatment, renal failure without dialysis, diarrhea for 1 year, persistently low serum albumin, age older than 50, symptomatic heart failure, and decision to forgo treatment. Box 13-2 identies common late-stage symptoms of AIDS. These symptoms are caused by progression of the disease itself, the effects of opportunistic infections, and side effects of medications. Fatigue, worry, and depression are present in almost all patients (Selwyn & Rivard, 2003). In the period since highly active antiretroviral therapy (HAART) has been implemented, causes of death now are more likely to include hepatitis

Box 13-2

SYMPTOM BURDEN OF PATIENTS WITH ADVANCED AIDS

Listed in order of frequency based on a study of more than 3000 U.S. patients: Fever, sweats, or chills Diarrhea Nausea or anorexia Pain, numbness, or tingling in hands/feet Headache Weight loss Vaginal discharge, pain, or irritation Sinus infection or pain Visual problems Cough or dyspnea

Source: From Selwyn & Rivard (2003).

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B and C, various malignancies, and end-stage organ failure (Selwyn & Rivard, 2003). In addition, some patients fail to benet from HAART due to lack of health-care access, nonadherence to treatment regimens, psychiatric illness or chemical dependency, intolerable drug toxicities, viral resistance despite therapy, or other coexisting diseases. Preparation for death needs to coexist with the possibility that an effective antiretroviral regimen can be implemented. Challenging issues arise with dual goals of providing symptom relief and seeking to lengthen life for those living with advanced AIDS. Following are some of the related issues (Selwyn, 2003): Should highly active antiretrovirals (HAART) be discontinued, even in the presence of low CD4 and high viral loads? They may still be prolonging survival. However, their toxicities may be diminishing quality of life. Should prophylaxis against opportunistic infection be discontinued? An example is ganciclovir to maintain the sight in a dying person who has CMV retinitis. Should opportunistic infections be treated with specic anti-infectives that are costly and toxic, or should the symptoms be treated palliatively? If antiretrovirals are continued, they are known to interact with common antidepressants, benzodiazepines, and opioids. These should be used with great care and alternatives should be considered. Anorexia and weight loss should not be accepted without trials of medications that might reverse these manifestations, including megestrol acetate, steroids, testosterone, dronabinol, and recombinant human growth hormone. Regardless of the specic disease process, the last hours or days of life often follow a remarkably similar pathophysiological pathway.

FINAL TERMINAL PATHWAY: MULTIPLE ORGAN FAILURE


As death draws close, a pattern of common physiological events becomes predictable. The patient progresses from countless preterminal disease processes, as previously described, to travel a nal common pathway. Box 13-3 outlines the Pathophysiology of Dying Organs. This nal pathway will eventually include cardiopulmonary failure and often includes renal or hepatic failure. The heart may fail due to many causes, including myocardial damage or the workload imposed by terminal pathologies such as pulmonary disease, pericardial or myocardial metastases, anemia, sepsis, or herniation of the brain onto the medulla. The lungs may fail due to many causes, including pulmonary disease, pneumonia, embolism, heart failure causing pulmonary edema, pleural effusion, or brain herniation. Cardiopulmonary failure causes

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hypoxemia and reduced perfusion of vital organs, resulting in progressive loss of capacity to remain conscious, think, communicate, and move. Comfort is impaired because of acute air hunger due to impaired gas exchange and ineffective airway clearance; the conscious patient will be acutely apprehensive. Death is imminent as cardiac output and low levels of oxygen in the blood will not support life. Blood pressure drops, peripheral cyanosis and mottling deepen, periods of apnea lengthen, and accumulating pharyngeal and pulmonary secretions produce a death rattle. Kidney and liver failure are frequently associated events at the end of life; sometimes they are the initial cause as described earlier. At the very end of life, the kidneys fail when, due to any cause, there is reduced blood ow to the kidneys (prerenal failure) or obstruction to urine ow out of the kidneys (postrenal failure). Retention of sodium and water causes peripheral and pulmonary edema. The kidney no longer excretes nitrogenous wastes, so that creatinine and blood urea nitrogen accumulate. Capacities for thought and purposeful movement are impaired by accumulating toxic metabolites. Likewise, when the liver fails it no longer detoxies toxic metabolites so that they accumulate to impair thought. Increased levels of aldosterone and antidiuretic hormone and reduced synthesis of albumin cause edema and ascites. When kidneys and liver fail, comfort is threatened by uid build-up in the abdomen, lungs, and periphery. The pathophysiological consequences of end-stage organ failure produce a predictable set of signs and symptoms that indicate that the following nursing diagnoses will be relevant for most patients at the end of their lives: ineffective tissue perfusion, disturbed thought processes, activity intolerance, impaired gas exchange, ineffective airway clearance, and ineffective breathing pattern. Reexamine Box 13-3 to understand the links between organ failure, signs and symptoms, and end-of-life nursing diagnoses. Ineffective tissue perfusion is the focus of resuscitative and restorative care. In contrast, palliative nursing focuses on the other end-of-life nursing diagnoses.

The pathophysiological consequences of end-stage organ failure produce a predictable set of signs and symptoms, which indicate that the following nursing diagnoses will be relevant for most patients at the end of their lives: ineffective tissue perfusion, disturbed thought processes, activity intolerance, impaired gas exchange, ineffective airway clearance, and ineffective breathing pattern.

ANTICIPATING NURSING NEEDS


An essential skill for nurses working with patients at the end of life is being able to anticipate the disease course. Nurses able to predict the terminal course will be able to prepare the necessary interventions and to teach

Copyright 2006 by F. A. Davis.

Box 13-3
BASIC PROCESSES
Lungs

PATHOPHYSIOLOGY OF DYING ORGANS


SIGNS AND SYMPTOMS NURSING DIAGNOSES

Hypoventilation, increased airway resistance to expiration, obstruction, secretions accumulating. Resulting hypoxemia and hypercapnia. Heart working harder to circulate diminishing levels of oxygen

Reduced endurance Reduced mentation Dropping level of consciousness Reduced breath sounds Bubbles, crackles, wheezes, rhonchi Accumulating secretion Tachypnea, apnea Dyspnea, orthopnea Pursed lips, accessory muscles Tachycardia Angina

Activity intolerance Disturbed thought processes Impaired gas exchange Ineffective airway clearance and breathing pattern Discomfort related to shortness of breath Death anxiety and fear

Heart

Myocardial damage; causing heart failure. Without prior myocardial damage, heart eventually failing due to workload imposed at end of life

Reduced endurance Reduced mentation Tachycardia Arrhythmias Angina Oliguria

Activity intolerance Disturbed thought processes Pain related to angina Ineffective tissue perfusion Ineffective airway clearance and breathing pattern (continued)

307

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Box 13-3
BASIC PROCESSES
Heart

PATHOPHYSIOLOGY OF DYING ORGANS (CONTINUED)


SIGNS AND SYMPTOMS NURSING DIAGNOSES

Diminished cardiac output, causing reduced perfusion of brain, kidneys, periphery. Blood backing up into pulmonary circulation to cause pulmonary edema. Blood backing up into vena cava, jugular, hepatic vein, general circulation
Kidneys

Hypotension Discomfort related to edema, ascites, Dusky nail beds shortness of breath, angina Diminished peripheral pulses Death anxiety and fear Cyanosis and mottling of extremities Crackles, rhonchi Dyspnea, tachypnea, orthopnea Distended neck veins Ascites Pitting peripheral edema

Accumulating nitrogenous wastes Hyperkalemia from failure to excrete potassium Acidosis from failure to excrete hydrogen ions Retention of sodium and water, producing peripheral and pulmonary edema

Reduced endurance Impaired mentation Pruritus, uremic frost Neuromuscular irritability Nausea and vomiting Deep and rapid respirations Bradycardia and cardiac arrest Pitting edema in dependent tissues Pulmonary edema

Activity intolerance Disturbed thought processes Discomfort related to edema, pruritus, neuropathies Death anxiety and fear

Copyright 2006 by F. A. Davis.

Liver

Accumulating ammonia and other toxic metabolites, causing hepatic encephalopathy Resistance to venous ow into liver, forcing uid into lymphatic channels and then into peritoneal cavity Reduced detoxication of aldosterone and ADH, causing sodium retention Reduced albumin synthesis, diminishing colloidal osmotic pressure Diminishing ltration of intestinal blood by hepatic Kupffer cells so that more bacteria survive Portal hypertension, causing distention of venous channels in esophagus, stomach, intestine. Rupture, resulting in slow or massive bleeds
Source: Adapted from Zerwekh (2002).

Impaired mentation Peripheral and pulmonary edema Edema, ascites Peritonitis Sepsis Hematemesis Melena Bleeding esophageal varices Shock

Activity intolerance Disturbed though processes Discomfort related to edema and ascites Risk for infection Risk for bleeding

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patients and families what to expect. If we expect the patient to bleed from a malignant head and neck lesion likely to erode into the carotid, we make arrangements to manage this event in case it occurs. If we anticipate encephalopathy in a patient with failing liver, we anticipate necessary interventions. If the patient is at home, family members need extensive teaching and guidance.

Planting the Seeds An essential skill for nurses serving patients at the end of life is being able to anticipate the disease course. Anticipatory guidance involves proactive nursing, not reactive nursing that waits for a crisis and then attempts to put out the re when symptoms are out of control. Given a patient with a specic diagnosis, we anticipate a certain set of symptoms and nursing needs before we enter a room or make a home visit. We also need to anticipate future needs and prepare for them. In acute care, nurses are concerned to avoid life-threatening complications by identifying signs and symptoms early and having equipment ready. We seek to avoid crises leading to failure to rescue. Likewise, in palliative care, nurses are concerned to avoid complications that are likely to cause new suffering. We look for early signs of these problems, and have supplies ready to handle them. We seek to avoid crises leading to failure to comfort. For example, consider a home visit to Catherine A., a 76-year-old widow living in the home of her 70-year-old sister, Maria. She has three married daughters living nearby whose goals are to help Mama die in her own bed. Catherine suffered a right-sided CVA 2 years earlier, which left her with global aphasia, hemiplegia, and incontinence requiring a Foley catheter. She had been up in the wheelchair at the center of family activities until a second CVA just left her bedridden and dysphagic. Physical examination now reveals her to be somnolent, but able to respond to some commands. Her tongue is shiny and caked with white exudate, lungs are clear with diminished breath sounds throughout, breathing is irregular, hands are cool, blood pressure is 86/34, perineum is reddened and odoriferous, and feet are cold with nonpalpable pedal pulses. Her Foley is draining small amounts of dark amber urine with mucopurulent material. She is able to swallow small amounts of puddings and applesauce, but no clear liquids. Nursing anticipatory guidance involves explaining the physical symptoms to the family and advising them what to expect, including the risk of infection. Because the family does not want active treatment, including antibiotics, but does want Catherine to be comfortable, the nurse has secured an order for both lorazepam (Ativan) and morphine sulfate liquid, which are

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stored in the kitchen cupboard to be used for restlessness or shortness of breath. After this new stroke, Catherine is completely bedridden. The family needs to be taught care of the completely immobilized patient. Teaching also focuses on palliative measures to relieve Catherines existing stomatitis and poor perineal hygiene. The nurse also thinks proactively to anticipate problems that might well arise with obstruction of the catheter. The family has to be taught to irrigate the Foley catheter if blocked, and an extra catheter and insertion kit are left in the home. The nurse also begins discussions with the family about the meaning of food and the difculty of watching Catherine stop eating because that does mean that the end is near. They ask about the benets and burdens of tube feeding; with nursing guidance, they decide the burdens are too great. The discussion turns to sublingual and rectal drug administration, when Catherine can no longer swallow at all. The necessary medications are ordered and kept in the kitchen cupboard. Since Catherines death may be imminent, the nurse reviews the signs that she may have only hours left. These include mottling of the extremities and death rattle due to pharyngeal secretions accumulating. Now that the family members recognize the implications of these signs, they decide that they will gather relatives at the bedside and say their farewells.

CONCEPTS

IN

ACTION

Arthur Kent is a 55-year-old patient with advanced AIDS. He has been living for 14 years with HIV, acquired through a sexual relationship with a man who died of AIDS 2 years ago. He is an only child and both of his parents are dead. He was born and raised north of Billings, Montana, and still has a cattle ranch in Montana that is run by a cousin. He has a Masters in Social Work and was working as a counselor with abused children and their families until his latest disease exacerbation. He had been taking a regimen combining several types of antiretroviral agents (HAART or Highly Active Antiretroviral Therapy). Drug complications have caused neuropathies in his feet, so consequently, he has problems walking quickly. Recently, his antiretroviral therapy has become ineffective against the virus so that his CD4 count is zero and viral load is high. He has started on a new drug regimen, but laboratory values have not improved. He takes trimethoprim-sulfamethoxazole (Bactrim) to prevent PCP pneumonia. He has had diarrhea for over a year, which has responded only partially to imodium loperamide (Lomodium) and dicyclomine hydrochloride (Bentyl). His weight loss has been dramatic, dropping from 172 to 123 pounds in 1 year. His appearance greatly distresses him. His appetite is severely diminished. Now he has developed a sore throat and laryngitis that have further restricted his

(continued)

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CONCEPTS

IN

ACTION

intake of food and uids. He can only speak in a whisper. A friend brought him to the emergency department when he complained of increasing pain in the neck and dizziness when standing. Last night he was admitted to the medical oor. He told the night nurse that he is not afraid of death, but is afraid of the suffering before death. Physical examination reveals an emaciated middle-aged man. His tongue is dry with ssures; there are yellow-white plaques in the back of his throat. Lungs are clear, but he is coughing up blood. Apical pulse is 96 and regular. BP 96/62 sitting and 72/30 standing. Skin is intact; on top of the hand his skin easily pinches between the nurses ngers. Mr. Kent is afebrile. Peripheral pulses are present and there is no edema in the extremities. After a week in the hospital that included many tests, including CT, MRI, and biopsy of a laryngeal lesion, he has been rehydrated and is discharged. His new diagnosis is non-Hodgkins lymphoma for which the doctors are recommending laryngectomy, radiation, and chemotherapy. 1. Compare Mr. Kents condition with prognostic indicators for HIV discussed earlier. 2. Explain the medical culture that has led to recommendation of invasive therapies for the laryngeal mass. 3. Identify nursing diagnoses and goals for Mr. Kent. How do nursing goals change if Mr. Kent decides he wants continued aggressive medical and surgical intervention? How can both the goals of palliation and those focusing on intensive medical intervention be combined? 4. As Mr. Kents home-health nurse, how might you sit with him to help him decide on options for future care? What words would you use? What questions would you ask?

References
American Academy of Hospice and Palliative Medicine (2003). Pocket guide to hospice/palliative medicine. Glenview, IL: AAHPM. Anderson, R., & Smith, B. (2005). Deaths: Leading causes for 2002. National Vital Statistic Reports, 53(17). Basta, L. (2000). A graceful exit: Life and death on your own terms. Xlibris Corp. Christakis, N. A. (1999). Death foretold: Prophecy and prognosis in medical care. Chicago: University of Chicago. End-Stage Renal Disease Workgroup. (2002). Final summary report: Recommendations to the eld. Princeton, NJ: Robert Wood Johnson Foundation.

Goodlin, S. (2003). Report on consensus conference: Palliative and supportive care in advanced heart failure. AAHPM Bulletin, 3(2), 1, 2122. Heidrich, D. (2001). Malignancies. In K. Kuebler, P. Berry, & D. Heidrich (Eds.), End of life care: Clinical practice guidelines (pp. 165179). Philadelphia: WB Saunders. Krebs, L., & Russell, T. (2001). Lung cancer. In R. Gates & R. Fink (Eds.), Oncology nursing secrets (2nd ed., pp. 263270). Philadelphia: Hanley & Belfus. Iredale, J. (2003). Cirrhosis: New research provides a basis for rational and targeted treatments. British Medical Journal, 327(7407), 143147.

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Lamont, E., & Christakis, N. (2003). Complexities in prognostication in advanced cancer: To help them live their lives the way they want to. Journal of the American Medical Association, 290(1), 98104. National Hospice Organization. (1996). Medical guidelines for determining prognosis in selected non-cancer diseases (2nd ed.). Arlington VA: National Hospice Organization. Newsbrief. COPD Patients rarely discuss end-of-life plans with physicians (2004). American Journal of Hospice and Palliative Care, 21(1), 13. Nohria, A., Lewis, E., & Stevenson, L. (2002). Medical management of advanced heart failure. Journal of the American Medical Association, 287(5), 628640. Pahnke, J., & Volicer, L. (2002). Caring for persons with dementia: A palliative approach. Journal of Hospice and Palliative Nursing, 4(3), 143149. Porth, C. (2005). Pathophysiology: Concepts of altered health states

(7th ed.). Philadelphia: Lippincott, Williams & Wilkins. Prommer, E. (2004). Guidelines for the use of palliative chemotherapy. AAHPM Bulletin, 5(1), 14. Selwyn, P. (2003). HIV/AIDS in the new therapeutic era: Revisiting palliative care. AAHPM Bulletin, 3(2), 48. Selwyn, P., & Rivard, M. (2003). Palliative care for AIDS: Challenges and opportunities in the era of highly active anti-retroviral therapy. Journal of Palliative Medicine, 6(3), 475487. Veatch, R. (2003). The basics of bioethics (2nd ed.). Upper Saddle River, NJ: Prentice-Hall. Whitman, W. (2003). To one shortly to die. The presidents council on bioethics. Being human: Readings from the presidents council on bioethics. Washington, DC: U.S. Government. Zerwekh, J. (1994). The truth-tellers: How hospice nurses help patients confront death. American Journal of Nursing, 94(2), 3134.

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C H A P T E R

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Philosophical Reections I swore never to be silent whenever and wherever human beings endure suffering and humiliation.
ELIE WIESEL (1986), SURVIVOR OF THE NAZI DEATH CAMPS.

Learning Objectives 1. Dene pain and contrast it with the denition of suffering. 2. Explain the challenges of pain control and how the subjectivity of the pain experience makes it difcult to control. 3. Identify the consequences of unrelieved pain in the dying and the effects on survival if pain is controlled. 4. Dene total pain. 5. Summarize the effects of culture, gender, and age on the pain experience. 6. Explain the barriers to comforting and identify those you have witnessed. 7. Identify essential dimensions of pain assessment. 8. Give an example of how selected comforting nursing interventions can relieve pain. 9. Explain how complementary therapies can be used at the end of life.

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Comforting is the process of easing physical or emotional distress. Comforting is a vital dimension of caring for dying people and is illustrated as the leaves on the End-of-Life Caregiving Tree. The Caregiving Tree is rooted in self-care and branches out into all of the complex human needs at the end of life. The leaves covering and protecting the branches represent the numerous ways to relieve physical suffering for people at the ends of their lives. This chapter is the foundation for the knowledge essential to relieving physical discomfort. It denes pain, considers it as one dimension of suffering, and establishes nursing responsibility for its alleviation. Pain is examined as a pathophysiological process affected by complex psychosocial dynamics that must be addressed through a holistic interdisciplinary approach. The chapter identies barriers to comforting, as well as forces that promote comfort, and it concludes by addressing pain assessment and detailing comforting nursing interventions. The word pain is derived from the Latin word poena, which means punishment. The American Society of Pain Management Nurses (St. Marie, 2002) has created a conceptual denition of pain. Pain is subjective, which means it cannot be measured objectively. It is an intense feeling of discomfort, which usually indicates that tissue has been damaged; it includes physiological and behavioral responses. Pain is known to observers only through patient reporting. In this text, we define pain as whatever the patient says hurts.

Internet Reference Box The American Society of Pain Management Nurses can be contacted through www.aspmn.org. This organization publishes the journal Pain Management Nursing.
WWW.

Pain is whatever the patient says hurts. It is an intense feeling of discomfort, which usually indicates that tissue has been damaged.

The Hospice and Palliative Nurses Association (HPNA, 2004) has identied the consequences of unrelieved end-of-life pain: Causing hopelessness and powerlessness in patients Causing hopelessness and powerlessness in families Consuming energy and attention of the dying Impairing social interactions Hastening death by increasing physiological distress, immobility, thromboemboli, and pneumonia

With better pain control, dying patients live longer and better. Pain shortens life. Relief of pain extends life. The position of the Hospice and Palliative Nurses Association is that:

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All people, including vulnerable populations such as infants, children, and the elderly, facing progressive, life-limiting illness have the right to optimal pain relief. All healthcare providers have the obligation to believe the patients report of pain (HPNA, 2004, pp. 6263).

With better pain control, dying patients live longer and better. Pain shortens life. Relief of pain extends life.

Internet Reference Box The Hospice and Palliative Nurses Association can be viewed at www.hpna.org.
WWW.

PAIN AND SUFFERING


Pain is but one physical dimension of that complex psychic distress or human misery called suffering. Suffering involves a threat to the persons integrity or survival as a whole person (Cassell, 1991). Morse proclaims, nurses are the caretakers of suffering (2001, p. 47). She identies two opposing ways that people cope with suffering: enduring, which involves emotional suppression; and emoting, which entails emotional releasing. Enduring involves suppressing emotional response when the integrity of oneself is threatened. It is a natural response that permits the person to keep on functioning. Thus, a person who has just learned that her cancer has metastasized to her liver and brain may maintain a mask-like expression, going about business as usual with disinterest, focusing on the present to keep going. Occasionally, she may erupt emotionally over trivial concerns, but then she returns to enduring behavior to stay in control. Generally, when a person is enduring, he or she will not nd it helpful to be touched or consoled by the nurse. He or she is blocking emotions and does not want them brought up. The caring response is silent presence, not empathetic statements. By contrast, Morse describes emoting as confronting the meaning of the suffering. Associated behaviors include crying, screaming, moaning, and persistent talking about feelings. Posture may be stooped over and the face is described as drooping. The caring response from the nurse is empathy through active listening and caring touch, when culturally appropriate. In response to suffering, many people move back and forth between enduring and emoting. They move from enduring to emoting when they acknowledge their suffering. They move from emoting back to enduring in order to be productive and get through the situation. These behaviors are determined by personality, understanding of the situation, and the norms of culture and religion.

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Planting the Seeds Pay careful attention to how your patients are coping with suffering. If their nonverbal cues indicate tight self control, do not assume that they will be helped by encouraging expression of feelings. The therapeutic response is to stand by and be available, but not intrusive. Help them maintain composure. If their nonverbal and verbal signs are openly expressive of suffering, listen and use empathetic responses like, This must be terribly difcult for you.

Being accountable for pain relief involves believing and responding to our patients.

Current Status of Pain Relief


Undertreatment of pain at the end of life is a serious health problem caused in part by its subjectivity, and in part by the fact that medical professionals fear overmedicating for pain. One inherent problem with pain is its subjectivity. For those who are suffering, the pain is a dominant certainty, but for the observer, the presence of pain in another is elusive. Thus, pain comes unsharably into our midst at once as that which cannot be denied and that which cannot be conrmed (Scarry, 1985, p. 4). Too often, health professionals have perceived the voice of the patient as an unreliable narrator of bodily events, a voice which must be bypassed as quickly as possible so that they can get around and behind it to the physical events themselves (Scarry, p. 6). Pain cannot be measured, is invisible, and is poorly expressed in language; as a result, it is frequently ignored. We can easily be in the presence of another person in pain and not see or hear it. Since the middle of the 20th century, relief of pain has become peripheral to the attention and responsibilities of medical and nursing staff (Fagerhaugh, 1977). Contemporary medical practice focuses on the duty to preserve life and physiological functioning. The dominant mythology is that relieving pain will shorten life or suppress functioning. Being accountable for pain relief involves believing and responding to our patients. Unfortunately, many nurses and medical staff believe they know the patients bodies and needs better than patients know themselves. Responding to pain can become an issue of power and control. Likewise, many physicians fear prescribing treatments for pain, despite scientic evidence that opioids can be used safely. Fear of addicting patients and overmedicating them is deeply embedded in medical culture. Despite a solid body of evidence regarding the possibilities of effective pain relief, there has been little improvement over the last 30 years (Pasero & McCaffrey, 2004). Medical literature provides clear evidence that the United States is suffering from an epidemic of undertreated pain (Rich, 2001).

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Box 14-1
1. 2. 3. 4. 5.

FIVE IMPORTANT INGREDIENTS FOR PAIN RELIEF

Pain must be recognized. The nurse needs the courage to be present. The nurse often must be ready to do battle. The nurse must be more empathetic than judgmental. The nurse must be willing to educate himself or herself.

Source: From St. Marie, (2002), pp. 34.

Health-care team members do not hold each other accountable to relieve the suffering of their patients. For instance, a chart review of 195 patients in a large Midwestern medical center revealed that 77% of patients had been in pain, much of it poorly controlled (Paice, Muir, and Shott, 2004). Pain control in nursing homes also continues to be poor; physicians underprescribe analgesics and nurses give less than what is prescribed. But the fact remains that pain does exist. For instance, more than 80% of people living with cancer develop pain before they die and the pain of cancer is greatly feared (Bruera & Kim, 2003). Dying people continue to suffer pain that could be relieved. The reasons for this failure to comfort are discussed in more detail later in this chapter. St. Marie (2002) has identied ve important ingredients for pain relief. See Box 141.

THE DYNAMICS UNDERLYING PAIN


The pain of organic illness is never an isolated phenomenon. Pain is a holistic biopsychosocial phenomenon. When a person is living with pain at the end of life, all dimensions of the human experience are interwoven. Pain impairs the physical, psychological, social, and spiritual well-being of the individual. For instance, a person in persistent pain may become depressed and unable to interact with other people. He might cry out to God to explain his agony. Unrelenting physical pain may manifest itself in irritable behavior, hostility, and changes in eating and sleeping. It is common for people to withdraw and isolate themselves. Coping with their suffering becomes the exhausting, consuming center of their existence. Likewise, diminished psychological, spiritual, and social well-being will often aggravate the experience of physical pain. When a person is depressed and has withdrawn from others, pain is experienced more acutely. Cicely Saunders, founder of the modern hospice movement, rst described this as the concept of total pain (Saunders, 1976). The person ends up suffering at many levels. Because pain is a holistic biopsychosocial phenomenon, the interdisciplinary palliative team should include a range of disciplines: nursing, medicine, social work, spiritual counseling, physical therapy, and occupational therapy. The following sections describe major dimensions of the pain experience.

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Pain impairs the physical, psychological, social, and spiritual well-being of the individual. . . . Likewise, diminished psychological, spiritual, and social well-being will often aggravate the experience of physical pain.

Pathophysiology of Pain
Pain generally implies that certain tissues have been injured. When tissues are injured, the body releases biochemical mediators, such as prostaglandins, histamine, serotonin, bradykinin, and the interleukins (St. Marie, 2002). These substances activate sensory nerve endings called nociceptors, which transmit the painful message through the peripheral nervous system. Nociceptive transmission occurs through the rapidly conducting A delta bers and the slower conducting C bers. Both ascend to the dorsal horn of the spinal cord where the sensory input is affected by neurotransmitters and other chemicals. Pathways ascend from the dorsal horn to transmit pain impulses to the brain stem, medulla, and thalamus. From the thalamus, bers transmit pain (nociceptive) messages to the cerebral cortex, where pain is perceived, and the limbic system, which generates emotional reaction. Endogenous opioids (enkephalin, endorphin, dynorphin) inhibit pain transmission by binding to opioid receptors that are found in ascending and descending pain pathways. Mediated by the cerebral cortex and limbic system, perception and emotional reaction to pain differ signicantly between individuals. The pain of organic illness is never a phenomenon isolated to the physical. For instance, depression and physical pain are intertwined (Vastag, 2003). Recent medical research has demonstrated that serotonin and norepinephrine regulate emotional pain as well as physical pain sensation. It is well known that gender, age, and culture inuence the pain experience.

Gender Differences in Pain Perception


Research has demonstrated that there are signicant differences in the way men and women perceive and respond to pain. Vallerand and Polomano (2000) note that most studies reveal that women have a lower tolerance for pain and rate its intensity higher. For instance, after abdominal surgery, women report pain of greater severity than men. Although they are more likely to experience and report pain, women are far less likely than men to receive adequate pain management (Hoffman & Tarzian, 2001). Their reports of pain are viewed less seriously, and they are perceived as better able to put up with the pain. When women complain of pain, they are often discounted and the pain is assumed to be due to emotional rather than physical causes.

Age Differences: Children and the Elderly


Pain is experienced differently at both ends of the age continuum.

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Children in Pain Parents report a high incidence of their children suffering pain at the end of life. The pain of children in particular continues to be ignored due to two myths: (1) that infants and young children do not feel pain as intensely adults; and (2) that failure to relieve their pain brings no negative consequences (Institute of Medicine, 2003). In reality, pain in children can have the following ill consequences (Huff & Joshi, 2001): Tachypnea leading to respiratory alkalosis, uid loss, and exhaustion Splinting leading to atelectasis Immobility Fear and anxiety resulting in troubling behaviors, including social withdrawal

Children actually have less tolerance of pain than adults (Huff & Joshi, 2001). They have not been socialized to ignore hurting. They have not learned any adult coping mechanisms, like distraction. Young toddlers can point to the hurting place or mark it on a drawing. At age 3 or 4 years, most can use rating scales, such as FACES, which presents a line of cartoon illustrations with a happy face on the left end and a series of more and more distressed faces moving toward the right. The child chooses which face represents how he or she feels. See Box 12-4. Children who have been exposed to many painful treatments might hesitate to tell us about the pain because they fear negative consequences such as more painful interventions. Childrens behavioral indicators of pain increase as numbers of painful experiences increase. Behavioral indicators of pain in children might include: Restlessness and irritability Changes in sleep Changes in feeding Inability to be consoled Changes in crying patterns Head banging, rocking, or other repetitive movements Changes in posture Immobility of affected body part or whole body Unusual submission, withdrawal (Huff & Joshi, 2001)

Chapter 12 discusses the end-of-life needs of dying children and Box 12-4 presents Myths and Realities about Childrens Pain. Elders in Pain Pain is a common everyday experience for individuals older than 60; it is not uncommon to experience back or joint pain or distress related to digestion. The incidence of pain increases with those living in nursing homes and even more among individuals at the end of life. Elders are less likely than younger patients to receive adequate analgesia. A large study of nursing home residents documented that more than one fourth of patients with daily cancer

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pain received no analgesia (Bernabei, Gambassi, Lapane, and Landi, 1998). Those aged 85 and older and minority patients were most likely to be undertreated. Many older persons believe that pain is a normal part of aging that must be endured and may not report or complain of pain because: They want to be seen as good patients and perceive health professionals as too busy. They dont want to be a bother. They fear the underlying cause of pain may be serious disease. They consider other problems to be a priority. They communicate ineffectively by choosing other language to describe it, like soreness or aching. They fear side effects or addiction to analgesics, even acetaminophen or aspirin. They may pride themselves on enduring without pain medicine. The American Geriatric Society recommends the following be considered when assessing pain in older persons (Miakowski, 2000): Recognize any pain that signicantly affects quality of life Recognize terms that may be distant synonyms for pain: burning, aching, hurting, discomfort, soreness, nagging, tightness, and heaviness Treat underlying physical causes Teach patients and/or caregivers to record pain in a diary Reassess patients regularly Evaluate nonverbal pain behavior for those with language or cognitive impairments

Planting the Seeds Do not accept pain as a normal experience that the elderly must endure. Investigate its nature. Be sure to involve the family to identify changes in behavior and function that indicate the presence of pain. In addition to inquiring about pain, use other terms like hurting or aching or discomfort. Remember that poor vision or hearing can lead to misunderstanding. Encourage the patient or family to keep a pain diary. Nonverbal clues indicating that pain is present include reactions when moving or being positioned, irritability, guarded posture, withdrawal from human interaction, grimacing, furrowed brow, crying, moaning, and decreased or restless behavior (Panke, 2003). It helps to know the patient to be able to recognize changes in baseline behavior. Nurses can also ask family or friends how the patient usually behaves when in pain and if and why they believe the patient is currently in pain. If the patient has a condition that would be painful to others, nurses should suspect the presence of pain. The nurse should consider whether she would hurt in similar circumstances. When suspecting pain,

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try to get the patients feedback, such as by head nodding. Some nonverbal and cognitively impaired adults are able to use the FACES pain-rating scale. Unmanaged pain in the elderly has many adverse consequences, including depression, withdrawal, impaired sleep, impaired activity and endurance, problems with gait and falls, impaired nutrition, inappropriate use of medication, and depression (Miakowski, 2000).

Cultural Differences in Experiencing Pain


Pain holds different meaning for different cultural groups. Although there is no evidence that actual physiological pain thresholds vary by culture group (Lasch, 2000), culture determines the entire experience of pain, from what the patient perceives to how the patient communicates pain. Box 14-2 presents

Box 14-2
Native American

PAIN IN SELECTED CULTURAL GROUPS


Cause: Pain may be related to past or future event; may be caused by evil spirit. Expression: Indirect communication. May speak vaguely about pain. May avoid eye contact and stay silent. May not ask for analgesic. Look for nonverbal clues. Cause: Variable. Expression: Open usually; silence may mean distrust Cause: Pain may be seen as punishment. Expression: Generally expressive except stoicism valued in male Mexican Americans. May avoid direct eye contact. Cause: May be caused by imbalance of yin and yang in body. Expression: Often stoic and not complaining. May avoid eye contact and not ask questions. May report to family rather than nurse. Look for nonverbal clues. Cause: May believe illness due to wrong actions. Expression: May avoid eye contact. Modest. Cause: May be seen as punishment; suffering may atone for wrongdoing. Expression: Women expressive and men see expression of pain as weakness.

African American

Hispanic

Chinese American

South Asian (India, Pakistan, Sri Lanka, Nepal) Arab American

Source: Adapted from St. Marie (2002).

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generalizations about pain in selected cultural groups. There are dramatic cultural differences in how pain is communicated. Native American and Chinese patients, for example, may not complain directly about pain or ask the nurse for pain relief. In contrast, African American and Hispanic people are usually straightforward in communicating discomfort. Consider cultural generalizations with great caution because there is signicant diversity within groups, and individuals are shaped by the extent to which they have been exposed to and adopted mainstream culture. Box 14-3 presents the

Box 14-3

CONTROLLING PAIN FOR A HMONG PATIENT

Lia came to the U.S. as a refugee. The people of her mountainous Laotian village had been recruited to ght against the Communists. When the Communists won the Vietnamese war, her people ed the country. They rst lived in refugee camps in Thailand and then arrived in California. Lia is 46 years old. She is a mother and grandmother. As a housewife, she has learned only enough English to shop for family essentials. She cannot read. Lia has seen a physician only to deliver her children. Now she is dying of cervical cancer. She adheres to traditional customs and religion. As with other traditional Hmong, she defers to male family members for important decisions. For Lia, the world is inhabited with spiritual beings that inuence all aspects of human life. She believes that her illness and suffering are caused by angry ancestors. Her family has slaughtered several pigs and chickens to appease the ancestors, but Lias suffering has only gotten worse. When the home-health nurse visits, she nds it difcult to assess pain. Hmong people tend to defer to authority and responses of yes or no may be attempts at politeness and not reliable indications of the degree of pain or how it is being managed. The nurse develops the following culturally competent pain-relief strategy: Using an interpreter or family member, ask the patient to explain her understanding of the illness, treatment, and pain. Ask what her goals are for pain relief. She may defer to male family members. Ask the family to explain their understanding of the illness, treatment, and pain. Seek their acceptance and involvement in a pain relief plan. Clarify health beliefs and do not criticize traditional aspects. Involve the family in all aspects of assessment and planning. Use a pain scale that does not involve numbers or words. Try the FACES scale. Do not ask yes or no questions. Ask the English-speaking family members to repeat explanations. Afrm the use of traditional home remedies and spiritual ceremonies.

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challenges of pain relief among the Hmong people, who are migrants from Southeast Asia. Chapter 8 describes culturally sensitive end-of-life nursing. Recent studies indicate that patients from minority racial and cultural groups are less likely to have their pain controlled (Lasch, 2000). These studies have documented that when mainstream and minority patients report the same amount of pain, physicians and nurses tend to be more responsive to the nonminority group. African Americans in excruciating pain due to lifethreatening illness or major surgery are denied effective pain medicine due to factors which ultimately center on race (National Medical Association Panel, 2002). Whether the patient is from mainstream or minority culture, it is often helpful to discern the meaning of pain for an individual whose pain is poorly controlled. For many, pain is an enemy to be eradicated. For some, it is a trial to be endured. For others, it is a punishment. One hospice patient posed particular challenges for the author. A founder of a dramatic troupe, he was dramatic in expressing his pain. He would cry in pain proclaiming, It hurts! It hurts! as he rocked back and forth in bed. Nevertheless, he refused to take any analgesics and would not cooperate with an acupuncturist. He also refused to speak to a spiritual counselor. Finally, another nurse tried to help him; she was able to remain calm in the face of his nonadherence with comforting interventions. Within days of his death, he told her that he perceived his pain as Divine justice.

BARRIERS AND FACILITATORS OF COMFORT


Box 14-4, Barriers and Facilitators of Comfort, summarizes major factors that inhibit nurses practice of comforting. First of all, discomfort is peripheral to our attention. Nurses are socialized to follow medical orders, monitor physiological function, and coordinate the countless expectations of the bureaucratic environments in which we work. Paying attention to pain and suffering often makes us feel vulnerable, and yet it is a responsibility that goes to the heart of our profession. Recognizing the overwhelming urge to overlook the pain in the body in front of them, the introspective nurse must tap into the ability to stretch beyond his or her own reality. . . . Just as nurses have to overcome their own internal urge to overlook the patients pain, they must convince a colleague (the prescribing physician) to overcome the same urges (St. Marie, 2002, p. 3). Those of us who are experienced need to regain beginners eyes and ears to hear the calls of those who are hurting.

Recognizing the overwhelming urge to overlook the pain in the body in front of them, the introspective nurse must tap into the ability to stretch beyond his or her own reality (St. Marie, 2002, p. 3).

Secondly, we work in health-care systems that still do not hold physicians and nurses accountable for pain relief. This is still true despite the fact

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Box 14-4
BARRIER

BARRIERS AND FACILITATORS OF COMFORT


FACILITATOR We choose to pay attention. We are accountable and develop systems for accountability. We believe patients. We develop compassion for those who openly express pain. We are deliberately nonjudgmental. We never give up efforts to comfort. We continually seek knowledge and look for clinical experts as our role models. We choose to be patient advocates. We develop assertiveness skills to speak for those who cannot speak for themselves. We become aware of our fears, choose to stop nonproductive thoughts, nd role models. We use opioids wisely.

1. Discomfort is peripheral to our attention. 2. We do not hold each other accountable for pain relief. 3. We doubt patients claim that they are in pain. 4. We admire people who silently endure. 5. We blame people for their suffering. 6. We believe severe terminal pain is inevitable. 7. We lack knowledge of pain and palliation. 8. We feel powerless that our voices are not heard.

9. We are afraid to comfort.

10. We fear opioids.

that the Joint Committee on Accreditation of Healthcare Organizations (JCAHO) has established pain intensity as the fth vital sign and initiated standards that include patients rights to pain relief, assessment and documentation of pain intensity and character, follow-up with pain management, staff education in pain relief, policies for appropriate use of effective analgesics, patient education, and addressing individual needs for pain control after discharge (Phillips, 2000; Rankin & Mitchell, 2000). Within health-care organizations, we must create a culture and develop systems that include reporting pain, handling pain, monitoring pain, and documenting effectiveness of pain interventions. Third, we are socialized to doubt patients claims of pain. We fear being deceived about the extent of suffering. Human beings readily doubt the suffering of others; expression of pain is often suspect. We doubt the reality of each others pain and we judge those who express pain (Scarry, 1985). Even a few encounters with drug-seeking individuals can lead to our unfortunate categorizing of all who complain of pain as potential liars bent on deceiving

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us. Most are not. Keep in mind that pain is whatever the person experiencing it states that it is (McCaffery, 1979.).

Planting the Seeds You can often tell the difference between drug seeking individuals and those who need drugs to relieve their pain. The rst step is detailed assessment of their pain experience, which you must thoroughly document. Drug seekers not in pain tend to be vague and nonspecic about a pain complaint. Do not assume that terminally ill people who urgently ask for drugs at shorter intervals than ordered or who know a great deal about opioids are drug seekers. Their motivation is likely to be a desire for relief from pain rather than a desire to get high. Fourth, we admire those who silently suffer. Expectations of stoicism are deeply embedded in American culture and Western medical traditions. When we are young, we are told to be strong and not cry out when we receive injections or have blood drawn. Boys who cry when they are injured are taught to be quiet and take it like a man. Those who express pain are considered weak and of diminished character. Stoics seek to maintain their indifference in the face of suffering. Nurses must develop compassion for those who openly express pain. Rather than respecting stoicism and silent suffering, nurses should encourage patients to express their pain accurately and not to suffer unnecessarily. Fifth, in some cultures we blame people for their suffering. Remember that the Latin root word for pain is poena, meaning punishment. Many traditional religious faiths believe that people suffer due to their sins, as indicated by statements like Shell get what she deserves, and What goes around comes around. Even among some who hold secular beliefs, there is the assumption that people in pain must have done something wrong to deserve their hurting. Perhaps they ate too much of the wrong food. Perhaps they exercised too little. Perhaps they smoked tobacco or drank alcohol. Perhaps their bad attitude led to disease. We seek to nd some fault to explain why some people suffer. It makes us feel safer if there is an explanation as to why someone else suffers. In contrast, nurses must choose to become deliberately nonjudgmental. This can only happen when we become aware of our judgmental assumptions and deliberately seek to suspend them whenever we nd them surfacing in our thoughts. Sixth and seventh, we assume that terminal pain cannot be controlled, revealing a continuing knowledge decit. Nurses must be open to learning and should continually seek palliative education and clinical experts as our role models and teachers. We must never give up efforts to learn more ways to comfort our patients.

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Eighth, nurses feel powerless to speak on behalf of patients in pain. Nurses must continually develop skills in advocacy, and should empower colleagues, followers, and students to speak for those who are hurting. People in pain often need nurses to be their advocates on the interdisciplinary team. Ninth, we are afraid. Fear and avoidance are basic feelings held by nurses and physicians, and these feelings often become barriers to relieving pain (Zerwekh, 2002). Human beings manage fear by avoiding circumstances in which they feel helpless and vulnerable; avoidance maintains a perception of being in control. We confront our own vulnerabilities and fears when we acknowledge pain and suffering.

We confront our own vulnerabilities and fears when we acknowledge pain and suffering.

Tenth, many nurses and physicians suffer from opiophobia, fearing opioids themselves, afraid that they will cause addiction or suppress respirations. Chapter 15 is devoted to providing the reader with a solid understanding of opioids and evidence that they need not be feared. Knowledge alone, however, does not change practice when fear overwhelms practice judgment. Such severe fears of comforting are best managed by cognitive restructuring approaches, which involve deliberately restructuring destructive thoughts (Zerwekh, 2002). To challenge our fear of comforting with opioids, we must become aware of disturbing thoughts such as Im going to make this patient addicted if I give him any more. Question their validity by seeking evidence-based knowledge. Work on stopping the thought as soon as it clouds your mind. Find palliative role models, and seek to be accompanied by those expert colleagues when facing the feared situation. Palliative nurses learn from colleagues with clinical expertise, not from books and lectures alone.

Palliative nurses learn from colleagues with clinical expertise, not from books and lectures alone.

Consider the experience of Tony, who has been a surgical nurse for 6 years. In his hospital and on his unit, he has learned to use opioids sparingly. The other nurses have taught him to give as little as possible and stretch the interval between doses. He tells his patients that pain is expected after surgery and that pain medications might turn them into addicts. The surgeons use patient-controlled intravenous analgesia for the rst 24 hours, then switch to acetaminophen with oxycodone, which is minimally effective and often causes heartburn and nausea. He has begun to wonder whether better acute pain relief might help his patients breathe more deeply, ambulate more quickly, and develop fewer complications. However, he is still afraid of giving opioids. Recently, ve beds on his unit have been converted for palliative

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care. Following a 2-day palliative care course, Tony remained skeptical about the pain relief principles he had learned, but he sincerely wanted to help his dying patients. Therefore, he chose the following strategy: 1. Whenever a patient tells him the pain is severe, he is aware of his own skepticism and his own judgments like, It cant be that bad. Shes just complaining. Shes too dependent on these drugs. 2. He challenges his own assumption, listens carefully to the patients, and responds with the best relief measures he has available. 3. When dealing with high opioid doses that frighten him, he seeks out the palliative-care nurse specialist to review the situation and go with him to the bedside, if possible.

Patient Barriers
In addition to barriers put up by health professionals, there are many barriers to patients themselves accepting pain relief (Ersek, 1999). Hesitant to distract physicians from disease treatment and fearing that pain is a sign that the disease is worsening, patients may be reluctant to report pain. They may decide that reporting pain is whining or complaining and seek to be a good patient. Fearing addiction or worrying about opioid side effects or tolerance, they may hesitate to take medication. Some people will proclaim, Im just not the kind of person that takes drugs. For others, cost is a barrier to effective analgesics. Some patients expect themselves to be stoic and others are fatalistic in accepting their suffering. If pain relief involves painful injections, some patients will choose to endure pain rather than needles.

ASSESSING PAIN
Comforting requires the nurse to detect patient cues of distress (Morse, 2000). Assessing discomfort involves recognizing signs and symptoms based on a willingness to see, hear, and empathize with the patients emotion and discomfort. The bedrock of pain assessment is asking patients about their pain and questioning them carefully about it. Essential components of pain assessment (see Box 14-5, Pain Characteristics Needing Assessment) are the determination of location, intensity, quality, pattern, aggravating factors, alleviating factors, and effects on life. Each characteristic is discussed in the following section, which concludes by proposing an acronym that can be useful to remember all of the components of pain assessment. Box 14-6 illustrates the Wisconsin Brief Pain Inventory, which is a practical clinical tool for ongoing pain assessment.

Location
It is essential to determine exactly where the pain is located and to examine that area physically, observing the site and palpating for tenderness. Many

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Box 14-5
CHARACTERISTIC Location

PAIN CHARACTERISTICS NEEDING ASSESSMENT


SAMPLE QUESTIONS TO ASK Where is your pain? Show me where you hurt. Can you point out the places where it hurts? How bad is your pain? Can you rate it for me on a scale from 0 to 10 with 10 being the worst pain you have ever had and 1 being no pain? What words can you use to describe your pain? Examples might be dull, aching, cramping, twisting, burning, stabbing, shocking. Is your pain predictable? When is it worse and when is it better? What makes your pain worse? Examples might be movement, a certain position, toileting, or after eating. What relieves your pain and makes you feel better? What is the effect of medication? How is the pain inuencing your life? Is it interfering with sleep or activity? How does it affect you emotionally or in your relationships? Is it affecting your spiritual life?

Intensity

Quality

Pattern Aggravating Factors

Alleviating Factors Effects on Life

patients report pain in several locations. Failure to question and examine carefully can result in mistakes like giving morphine for shoulder pain due to bursitis or for abdominal pain related to constipation! When patients complain of hurting all over, consider that it may be due to psychosocial suffering, although such pain is sometimes due to myalgia, arthritis, or multiple metastases. Investigate the source. It is helpful in the patient record to have a simple diagram of the human body, front and back, to locate the pain.

Intensity
Patients should be asked to quantify their pain using a subjective rating scale. With a numerical scale, a horizontal or vertical line is anchored on one end with a zero meaning no pain and at the other end with a maximum of 5 or 10 indicating severe pain. The patient assigns the severity of pain a number from 0 to 5 or 0 to 10. In the visual analogue scale, the line is drawn with no pain at one end and severe pain at the other end. The patient is

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Box 14-6
Study ID# Date: Time: Name: /

WISCONSIN BRIEF PAIN INVENTORY (SHORT FORM)


Hospital # Do not write above this line /

Last

First

Middle Initial

1) Throughout our lives, most of us have had pain from time to time (such as minor headaches, sprains, and toothaches). Have you had pain other than these everyday kinds of pain today? 1. yes 2. no 2) On the diagram, shade in the areas where you feel pain. Put an X on the area that hurts the most.

Right

Left

Left

Right

3) Please rate your pain by circling the one number that best describes your pain at its WORST in the past 24 hours. 0 No pain 1 2 3 4 5 6 7 8 9 10 Pain as bad as you can imagine (continued)

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Box 14-6

WISCONSIN BRIEF PAIN INVENTORY (SHORT FORM) (CONTINUED)

4) Please rate your pain by circling the one number that best describes your pain at its LEAST in the past 24 hours. 0 No pain 1 2 3 4 5 6 7 8 9 10 Pain as bad as you can imagine

5) Please rate your pain by circling the one number that best describes your pain on the AVERAGE. 0 No pain 1 2 3 4 5 6 7 8 9 10 Pain as bad as you can imagine

6) Please rate your pain by circling the one number that tells how much pain you have RIGHT NOW. 0 No pain 1 2 3 4 5 6 7 8 9 10 Pain as bad as you can imagine

7) What treatments or medications are you receiving for your pain? 8) In the past 24 hours, how much RELIEF have pain treatments or medications provided? Please circle the one percentage that most shows how much. 0% 10% No relief 20% 30% 40% 50% 60% 70% 80% 90% 100% Complete relief

9) Circle the one number that describes how, during the past 24 hours, PAIN HAS INTERFERED with your: A. General Activity: 0 1 Does not interfere 2 3 4 5 6 7 8 9 10 Completely interferes

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Box 14-6
B. Mood 0 1 Does not interfere 2

(CONTINUED)

9 10 Completely interferes

C. Walking ability 0 1 Does not interfere 2 3 4 5 6 7 8 9 10 Completely interferes

D. Normal work (includes both work outside the home and housework) 0 1 Does not interfere 2 3 4 5 6 7 8 9 10 Completely interferes

E. Relations with other people 0 1 Does not interfere F. Sleep 0 1 Does not interfere 2 3 4 5 6 7 8 9 10 Completely interferes 2 3 4 5 6 7 8 9 10 Completely interferes

G. Enjoyment of life 0 1 Does not interfere 2 3 4 5 6 7 8 9 10 Completely interferes

Source: Pain Research Group, Department of Neurology, University of WisconsinMadison. Used with permission.

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Box 14-7

PAIN INTENSITY SCALES

Visual Analogue Scale Numeric Pain Rating Scale Descriptive Words Pain Rating Scale

asked not to rate the pain with a number, but to mark the place on the line that represents the intensity of the pain. The FACES Scale, as mentioned earlier, uses cartoon faces with a smiling face at 0 and a grimacing face or a face with tears at the other end of the scale. See Box 12-4. The Verbal Rating Scale, another option, asks the patient to rate the severity of pain using descriptive adjectives that correspond to a numerical rating. See Box 14-7, Pain Intensity Scales. Most patients are able to assign a number to rate the intensity of their pain, but some cannot understand the abstract concept that a smaller or larger number indicates less or greater pain. They may be able to use the verbal rating scale, however, to describe the range of pain: none, annoying, uncomfortable, dreadful, horrible, or agonizing (Abrahm, 2000). For children and the cognitively impaired, or those for whom language is a barrier, the FACES scale may be useful. When the patient cannot self report his or her pain using any of these subjective rating schemes, careful observation of functional clues indicates both success and failure to relieve pain. The nurse should take careful note of alterations in sleep, activity, mood, ability to relate, and ability to enjoy life. Nonverbal clues suggesting pain include irritability, withdrawal, grimacing, and moaning. These indicators should be compared with the patients baseline behavior.

Quality
Vivid description of the quality of pain is helpful to determine the underlying cause. The McGill Pain Questionnaire (see Box 14-8) is a well-tested, widely used instrument to elicit patients verbal descriptions of their pain. Pain can be categorized as somatic, visceral, and neuropathic. Somatic pain is described as aching and dull, increased by movement, and able to be localized to the injured area (Abrahm, 2000). Somatic pain arises from skin, bone, muscle, connective tissues, and blood vessels. This is the pain associated with arthritis and bone metastases. Visceral pain can be aching, but can also feel like squeezing and cramping. Visceral pain arises from the internal organs and lining of body cavities. Visceral pain can localize to supercial tissues and radiate to a larger area of skin or muscle. This is the pain of myocardial ischemia or liver metastases. Neuropathic pain is described as burning, shooting, tingling, or shock-like. It arises from damage to peripheral nerves. This pain is experienced in diabetic and AIDS neuropathies.

Copyright 2006 by F. A. Davis.

Box 14-8
Patient's Name PRI:S
(1-10)

McGILL PAIN QUESTIONNAIRE


Date Time PRI(T)
(17-20) (1-20)

am/pm PPI

A
(11-15)

E
(16)

FLICKERING QUIVERING PULSING THROBBING BEATING POUNDING

11

TIRING EXHAUSTING SICKENING SUFFOCATING FEARFUL FRIGHTFUL TERRIFYING PUNISHING GRUELLING CRUEL VICIOUS KILLING WRETCHED BLINDING ANNOYING TROUBLESOME MISERABLE INTENSE UNBEARABLE SPREADING RADIATING PENETRATING PIERCING TIGHT NUMB DRAWING SQUEEZING TEARING COOL COLD FREEZING NAGGING NAUSEATING AGONIZING DREADFUL TORTURING
PPI NO PAIN MILD DISCOMFORTING DISTRESSING HORRIBLE EXCRUCIATING

12

BRIEF MOMENTARY TRANSIENT

RHYTHMIC PERIODIC INTERMITTENT

CONTINUOUS STEADY CONSTANT

13

2 JUMPING

FLASHING SHOOTING
3 PRICKING

14

BORING DRILLING STABBING LANCINATING


4

15

SHARP CUTTING LACERATING PINCHING PRESSING GNAWING CRAMPING CRUSHING TUGGING PULLING WRENCHING HOT BURNING SCALDING SEARING TINGLING ITCHY SMARTING STINGING DULL SORE HURTING ACHING HEAVY TENDER TAUT RASPING SPLITTING

16

17

18

E = EXTERNAL I = INTERNAL

19

20

COMMENTS:

10

0 1 2 3 4 5

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Pattern
Some pain may always be present and is termed baseline pain. Breakthrough pain may occur with activity, or as a result of underlying pathophysiology. The pattern should be documented because it assists in diagnosing the underlying cause. For instance, the pain of arthritis and bone metastases is aching and continual; it increases with movement. The pain of bowel obstruction comes and goes. The burning pain that can be a complication of breast surgery increases when the arm is extended and diminished when the arm is exed (Abrahm, 2000).

Aggravating and Alleviating Factors


Thorough initial pain assessment requires determining those factors that make the pain worse, such as deep breathing or anxiety, and those factors that alleviate pain. For instance, if massage reduces the pain, the pathology is likely to be of musculoskeletal origin, rather than neuropathic (ELNEC, 2000). Likewise, determine and document drugs and other remedies that have worked and not worked. For instance, have heat, cold, or other traditional or alternative remedies brought relief? Ask about herbal products and over-the-counter drugs. A plan of care should include whatever works to bring relief, and should, obviously, avoid those factors that aggravate pain.

Effects on Life
As has been discussed, pain can impair all aspects of life quality: emotional, social, economic, and spiritual. Nurses are particularly concerned with enhancing patients quality of living while dying. Therefore, we need to inquire about how the pain is interfering with everyday activities, such as work, movement, leisure activity, eating, sleeping, and relationships. Likewise, ask how the pain is affecting the person emotionally and spiritually. Inquire about depression, anxiety, fear, and enjoyment. What is the effect on the family? The following questions are useful to determine how pain may impact spiritual life (Abrahm, 2002): What are your religious beliefs about pain? Have your beliefs changed since you started to live with pain? Has there been any value to your living with pain? Has the pain affected your spiritual practice? Has the pain affected your spiritual beliefs or your relationship with God?

Investigating the effects of pain on the persons life assures the patient that we care about what they are enduring, and helps us to determine the actual extent of the pain experienced so that we can develop an effective plan

Copyright 2006 by F. A. Davis.

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Box 14-9

W5 TO ASSESS PAIN

A straightforward acronym to remember for pain assessment is W5. This acronym includes ve words: Where, Words, When, Worsens, Whole. W1Where is the pain located? W2Words to describe. Ask the patient to rate pain intensity and describe quality. Watch for nonverbal indicators. W3When does the pain occur? What is the pattern during the day? W4What worsens and relieves the pain? This identies the aggravating and alleviating factors. W5Whole life. What effect is the pain having on the persons whole life?

of care. Box 14-9, W5 to Assess Pain, proposes an acronym that can be helpful to assess the total pain experience. The initial pain history provides a baseline, but then the patient must be frequently reassessed. Patients must be urged to report changes in their pain. Rapid disease progression requires frequent reassessment in the last weeks of life. Pain ratings are now commonly charted at the same time as vital signs. But then we must take action to relieve the documented pain and comfort those who suffer. Box 14-10, Pain Management Outcome Measures, can be used to monitor pain management quality as part of hospital quality improvement efforts.

Box 14-10

PAIN MANAGEMENT OUTCOME MEASURES

1. Intensity of pain documented by a descriptive or numeric rating scale 2. Pain treated by a route other than intramuscular 3. Pain treated with regularly scheduled analgesics and other comforting interventions 4. Pain prevented and controlled to maximize function and life quality 5. Patients educated about pain management
Source: From Gordon et al. (2002).

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COMFORTING NURSING PRACTICE


Nurses risk being in the presence of pain without seeing, hearing, or responding. We must re-train ourselves to be advocates for those suffering. Understanding suffering, and the responses and needs of those who are suffering, rests squarely on the shoulders of nurses, and easing and alleviating suffering are the heart of nursing (Morse, 2001, pp. 4748). We are the largest group of health professionals and spend the most time at the sides of those in pain. We must choose to know patient experience and witness the presence of suffering. Witnessing requires seeing, hearing, acknowledging, documenting, and speaking out about pain. We must give voice to the burning, stabbing, and crushing experiences of patients so that their pain is not disregarded. We must not be silent. The American Society of Pain Management Nurses identies ve important ingredients for pain relief; see Box 14-1. Comforting nursing interventions to relieve pain and other distress include developing a caring relationship, teaching, anticipating comfort needs, offering hands-on comforting, attending to stimulation and rest, initiating complementary therapies, and managing pharmacological therapies.

Developing a Caring Relationship


A caring nurse-patient relationship is vital to comforting patients in pain. Details of the practice of connecting and caring presence are contained in Chapter 6. As has been described, pain can be an isolating, power draining, and emotionally debilitating experience. Patients may have little energy to reach out to others. The relationship offered by the nurse needs to be a genuine encounter; the nurses nonverbal and verbal behavior should communicate attention and receptivity. Persistence is essential because trust may develop very slowly, appearing only after the nurse has proven his or her reliability by persistently being present and implementing pain-relieving approaches that work. The expert nurse seeks to be available without being intrusive, offering to talk or just be there. A therapeutic relationship develops as we share our understanding of the patients experience, and as patients validate and clarify what they are actually experiencing. This relationship with the nurse can help sustain the patient through the pain experience. Total pain can be eased signicantly through experience of anothers presence. Just as isolation and abandonment heighten pain, the presence of a caring person is calming and relieving. Here, one nurse explains her use of presence to ease the anxiety of a patient who had not relaxed despite significant opioid dosing: I sat at her side, quietly. She could no longer speak but had been moaning and rocking with distress all morning. I held her hand lightly and waited. After a while, she rested and fell asleep.

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Teaching
Effective teaching is central to the goal of empowering the patient and family to learn to manage pain in the home environment. A teaching relationship begins with assessing the patient and family caregivers concerns, knowledge, motivation, and ability to learn. The nurse must then determine realistic learning objectives based on his or her own knowledge of pain relief and on assessment of what the particular patient/family needs to learn. Because there are so many behaviors that must be learned in order to manage pain effectively, the teaching relationship needs to be extended over time. Objectives are not stated in terms of what the nurse teaches, but in terms of how the learner behaves following teaching. Sometimes, presenting the facts in a clear and systematic way may not result in learning because of emotional and cognitive barriers. Strong emotions, including fear, are striking barriers to patients and families learning how to relieve pain (Zerwekh, 2002). Patients/families may not acknowledge the pain because of its association with progressive disease and loss of control. Patients may refuse to acknowledge pain or listen to nursing suggestions for its relief because they are protecting family from facing their condition; because their doctor told them they do not need so much medication; because they fear addiction; because they believe they must suffer for their sins; and for reasons that they cannot put into words. Likewise, impaired thought and attention render many dying patients unable to report their pain reliably or to manage their own comfort measures. At the end of life, patients dying at home become reliant on family caregivers to administer pain relief. However, family resistance to comforting parallels patient issues around fear and avoidance (Zerwekh, 2002). In addition, family dynamics can be quite challenging. Family members may continue life-long abusive patterns. They may be impaired by mental illness or chemical dependency. They may refuse to have opioids in the house. In challenging teaching situations, the nurse works with the interdisciplinary team to achieve the best possible outcomes. Individualized education that directly addresses patient misconceptions about pain treatment, along with development of strategies to control pain in order to address each persons own goals, is quite effective (Oliver, Kravitz, Kaplan, and Meyers, 2001). Often, patients need to develop and practice ways of negotiating with the physician even to receive satisfactory pain treatment in the rst place. Nurses also help patients to develop these negotiation skills.

Anticipating Comfort Needs


Anticipating comfort needs is a hallmark of palliative nursing. With experience, the nurse becomes able to predict the likely disease course and anticipate possible signs and symptoms. If pain exacerbation is likely, the family is prepared for it. Likewise, the nurse plans ahead for dyspnea, bleeding, seizures, anxiety, and whatever other sources of distress are likely. A nurse explains:

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We anticipate crises so that they are not crises. We walk through possibilities step-by-step. What would you do if he hemorrhages? What would you do if the pain gets bad and he cant swallow? We keep medications for crises in the home and teach the family how to manage.

Hands-on Comforting
Nurses comfort through hands-on nursing. We care for the body; we shave, turn, and care for the mouth and skin. Skin is the locus of many comfort measures a point of connection. . . . Sociologists point out that care of the skin and body is not high-status work, nor is it likely to be in a society that avoids images of dependency and the need for care (Benner, Hooper-Kyriakidis, and Stannard, 1999, pp. 257258). Yet hands-on comforting involves the skilled practice of basic nursing measures, such as positioning, dressing changes, and management of secretions to reduce discomfort. Here is a creative example of positioning to promote comfort: She and her husband had been sleeping in separate beds. He was afraid of hurting her and she was afraid that her swollen leg would hurt if they slept together. So we looked at the beds and bedroom and ways to arrange the beds. We put a single bed next to the double bed so there would be extra room. Then we got the two of them in and gured out a position with pillows so that she could have support for her leg and they could just cuddle. Another nurse describes management of dressings and secretions to promote comfort: I cleaned and changed dressings and tried to organize his supplies. His caregiver was overwhelmed. He had a fulminating wound and there were secretions all over the place. I spent half of my time on my knees in order to dress his wounds. We got the secretions under control and I made the dressings more manageable. He became less anxious and his pain nally came under control. Hands-on comforting also includes technological expertise when infusion pumps and access devices are used to infuse opioids A nurse describes this dimension of comforting. I did a lot of teaching until Doris became competent at managing the pump that infused the morphine into his epidural space. She knew how to turn it on and off. She could change the bags herself. We had to do quite a bit of trouble shooting with that pump. Joes epidural catheter came around to his abdomen in front. We taught her to do the dressing changes around it and to watch for infection.

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Attending to Stimulation and Rest


Attention to stimulation and rest is essential to comfort. Planning for and providing stimulation, distraction, rest, and retreat are vital comforting measures that require becoming attuned to the persons life. The nurse can help establish normal rhythms of day and night, rest and activity. In the technical environment, the nurse seeks to tame the disturbances of technology by controlling noise and light and intrusion. (Benner et al., p. 271). The contemporary challenge is that these nursing comfort measures can appear quite humble and ordinary to the point that organizational cultures ignore and eliminate them in favor of technological rituals. In the home environment, patients and families need help to control visitors and telephone calls, and to ensure periods of uninterrupted rest and sleep. Likewise, meaningful activities should be planned as the patient wishes. For instance, an older patient may want to rest all day in order to get up for the Wednesday night bridge group with friends she has had for more than 30 years. A young dying woman may want to skip the nurses next visit so that friends can take her to sit on the warm sand at the beach.

Complementary Therapies
At the end of life, expert nurses are open to using complementary therapies, such as music, herbs, or acupressure to complement mainstream palliative medicine. Complementary or integrative therapies include healing resources presently not considered part of conventional health care. Conventional health care is rooted in Western philosophy and is guided by scientic methods focused on treating disease (HPNA, 2003). Complementary methods are used in addition to, not as an alternative to, conventional palliative methods. These methods complement conventional medicine and are integrated in the conventional plan of care. Complementary therapies often are grounded in Eastern philosophy, emphasizing a holistic approach, the human experience of illness, and quality of life. In general, these therapies are less well studied than conventional approaches. Nevertheless, the National Center for Complementary and Alternative Medicine was established in 1998 as a division of the National Institutes of Health to support research. Palliative nursing roles regarding complementary therapies include: Gaining knowledge about specic types of complementary therapies, particularly their evidence base Informing patients and helping them decide about using these therapies Referring patients to qualied and respected complementary therapists Learning to utilize and incorporating selected types of complementary therapies in nursing practice to comfort Box 14-11 identies types of complementary and integrative therapies.

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Box 14-11
TYPE

TYPES OF COMPLEMENTARY AND INTEGRATIVE THERAPIES


EXAMPLES Therapeutic touch Reiki Qi gong Chiropractic Massage therapy Osteopathic manipulation Herbal therapies Dietary therapies Prayer Art, music, dance Hypnosis Meditation Ayurvedic medicine, traditional medicine of India that includes meditation, breathing, diet, exercise, massage, herbs, diet Traditional Chinese medicine, including herbs, massage, Qi gong, acupuncture Homeopathy, which uses small doses of minerals and plant extracts to strengthen the bodys defense mechanisms Naturopathy, which incorporates diet, herbs, homeopathy, acupuncture, spinal manipulation, counseling, and physical therapies

Energy therapies that are intended to inuence energy elds of body Physical manipulation of body

Biological therapies Mind-body interventions

Alternative medical systems in contrast to Western (allopathic) medicine

Internet Reference Box The National Center for Complementary and Alternative Medicine Web site can be accessed at www.nccam.nih.gov/health/whatiscam.
WWW.

A hospice nurse describes using imagery, one type of complementary technique, with a paralyzed young woman dying from multiple sclerosis: She had difculties with speech, with swallowing, with urination, with pain from muscle spasms. Since the pain was episodic,

Copyright 2006 by F. A. Davis.

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continuous opioids just knocked her out. The only thing she responded to for pain was imagery. I made imagery tapes with her. She would visualize her pain as a red spot and then I would have her visualize it getting light pink, then clear, and then blowing away in the breeze. Whenever she was having pain, she would ask for the tapes and the pain would go away.

Managing Pharmacological Therapies


Skilled end-of-life comforting requires that the nurse persistently work with the physician or nurse practitioner to try multiple pharmacological options as needed to comfort. The nurse communicates the need for analgesics and the experienced nurse actually makes recommendations for appropriate drugs. This requires balancing palliative success versus side effects of drugs. Fear of side effects must be overcome to permit competent adjustment of drugs. Organizing and reorganizing regimens and making major changes in regimens are essential end-of-life nursing competencies when the patients condition is constantly changing. A nurse describes one visit, Medication routes were changed, schedules adjusted, oxygen added, and personal care needs addressed. The knowledge foundational to managing palliative medications is discussed in Chapter 15, focusing on pharmacological pain management, and Chapter 16, focusing on relief of symptoms other than pain.

CONCLUSION
Pain and symptom management should be based on the following fundamentals: 1. Dont make assumptions. Believe the patients report of pain and other symptoms. 2. Relieve the pain to the extent patients choose and in ways they can accept. 3. Repeatedly investigate physical, psychosocial, and spiritual dimensions of pain and evaluate the effectiveness of interventions. 4. Anticipate pain and other symptoms and relieve them before they reoccur. 5. Include nursing and complementary interventions. 6. Develop expertise in the use of palliative medication. 7. Choose the least complex intervention to keep end-of-life care affordable and manageable by patients and families at home. 8. Never give up hope of relieving discomfort. Keep trying different approaches.

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CONCEPTS

IN

ACTION

Consider the plight of Maria, age 29, living with advanced AIDS. Marias family emigrated from Guatemala when she was 14 years old. Marias husband has already died of AIDS; she is living in a church-sponsored adult home after her parents and brother, fearful of contagion and feeling deep family shame, rejected her. She has lost one third of her body weight so that she currently weighs 85 pounds. Her vision is impaired due to CMV infection. Sitting for long periods and lying in one position cause signicant neuromuscular pain. Invasive cervical cancer is causing pelvic, back, and leg pain. Poorly controlled diarrhea has caused painful rectal excoriation. Currently, she is being seen by a team of four infection-control specialists who practice at the county hospital. 1. What kind of pain would you expect Maria to describe? What questions would you ask her to assess her pain thoroughly? 2. What psychosocial dimensions of pain are relevant to Marias case? 3. Are there any barriers to pain control that might be particularly likely with Maria? 4. Consider causes of Marias discomfort. What hands-on comforting measures will be essential? 5. What complementary nursing measures might be especially helpful for Maria? Look up traditional Hispanic healing methods in a crosscultural nursing text.

References
Abrahm, J. (2000). A physicians guide to pain and symptom management in cancer patients. Baltimore: Johns Hopkins. Benner, P., Hooper-Kyriakidis, P., & Stannard, D. (1999). Clinical wisdom and Interventions in critical care. Philadelphia: WB Saunders. Bernabei, R., Gambassi, G., Lapane, K., & Landi, F. (1998). Management of pain in elderly patients with cancer. Journal of the American Medical Association, 279(23), 18771883. Bruera, E., & Kim, H. (2003). Cancer pain. Journal of the American Medical Association, 290(18), 2476. Cassell, E. (1991). The nature of suffering and the goals of medicine. New York: Oxford University Press. ELNEC (End-of-Life Nursing Consortium). (2000). Pain management.

Washington, DC: American Association of Colleges of Nursing. Ersek, M. (1999). Enhancing effective pain management by addressing patient barriers to analgesic use. Journal of Hospice and Palliative Nursing, 1(3), 8796. Fagerhaugh, S., & Strauss, A. (1977). Politics of Pain Management. Menlo Park, CA: Addison-Wesley. Hoffman, D., & Tarzian, A. (2001). The girl who cried pain: A bias against women in the treatment of pain. Journal of Law, Medicine and Ethics, 29, 1327. Hospice and Palliative Nursing Association (HPNA). (2003). Position paper: Complementary therapies. Journal of Hospice and Palliative Nursing, 5(2), 113117. Hospice and Palliative Nursing Association (HPNA). (2004). Position

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paper: Pain. Journal of Hospice and Palliative Nursing, 6(1), 6263. Huff, S., & Joshi, P. (2001). Pain and symptom management. In A. Armstrong-Daily & B. Zarbock (Eds.), Hospice care for children (pp. 2348). New York: Oxford University Press. Institute of Medicine. (2003). When children die: Improving palliative and end of life care for children and their families. Washington, DC: National Academy Press. Lasch, K. E. (2000). Culture, pain, and culturally sensitive pain care. Pain Management Nursing, 1(Suppl. 1), 1622. McCaffery, M. (1979). Nursing management of the patient with pain. Philadelphia: Lippincott. Miakowski, C. (2000). The impact of age on a patients perception of pain and ways it can be managed. Pain Management Nursing, 1(Suppl. 1), 27. Morse, J. (2001). Toward a praxis theory of suffering. Advances in Nursing Science, 24(1), 4759. National Medical Association (NMA) Panel (2002). Oliver, J. W., Kravitz, R., Kaplan, S., & Meyers, F. (2001). Individualized patient education and coaching to improve pain control among cancer outpatients. Journal of Clinical Oncology, 19(8), 22062212. Paice, J., Muir, J. C., & Shott, S. (2004). Palliative care at the end of life: Comparing quality in diverse settings. American Journal of Hospice and Palliative Care, 21(1), 1927. Panke, J. (2003). Difculties in managing pain at the end of life. Journal of Hospice and Palliative Nursing, 5(2), 8390.

Pasero, C., & McCaffery, M. (2004). Comfort-function goals. American Journal of Nursing, 104(9), 7781. Phillips, D. (2000). JCAHO pain management standards are unveiled. Journal of the American Medical Association, 284(4), 428429. Rankin, E., & Mitchell, M. (2000). Creating a pain management education module for hospice nurses: Integrating the new JCAHO standards and the AHCPR pain management guidelines. Journal of Hospice and Palliative Nursing, 2(3), 91100. Rich, B. (2001). Prioritizing pain management in patient care. Postgraduate Medicine, 111(3), 1517. Saunders, C. (1976). Care of the dying. London: Nursing Times. Scarry, E. (1985). The body in pain: The making and unmasking of the world. New York: Oxford University Press. St. Marie, B. (2002). American society of pain management nurses: Core curriculum for pain management nursing. Philadelphia: WB Saunders. Vallerand, A., & Polomano, R. (2000). The relationship of gender to pain. Pain Management Nursing, 1(Suppl. 1), 815. Vastag, B. (2003). Scientists nd connections in the brain between physical and emotional pain. Journal of American Medical Association, 290(18), 2389. Wiesel, E. (1986). Nobel Acceptance Speech. Oslo, Norway. Available through the Elie Wiesel Foundation for Humanity. Zerwekh, J. (2002). Fearing to comfort: A grounded theory of constraints to opioid use in hospice care. Journal of Hospice and Palliative Nursing, 4(2), 8390.

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C H A P T E R

15

Medicating for Pain at the End of Life


JOYCE ZERWEKH AND DIONETTA HUDZINSKI
Philosophical Reections Suffering enforces isolation. It ruptures a persons sense of wholeness, fracturing his or her personhood.
GREGORY & ENGLISH, 2001, P. 21

Learning Objectives 1. Identify and explain essential principles for using palliative analgesia at the end of life. 2. Identify the effects and side effects of nonopioid analgesics. 3. Identify the therapeutic and side effects of opioids. 4. Examine three common fears that physicians and nurses may have about using opioids and identify evidence that counters those fears. 5. Identif